#LCSM Chat Topic 10/23: How can we help new stage IV #lungcancer patients consider 2nd opinions, mutation testing and clinical trials?

The following post is reblogged with permission from today’s #LCSM Chat blog.


Most patients experience a period of stunned disbelief or shock when they hear a diagnosis of “metastatic lung cancer.”  For those who are offered treatment options, the first few months revolve around medical appointments.  Others may only be told to go home and get their affairs in order.  Patients and family members may be in denial, or trying to process what all those dismal survival statistics mean for their future. It might be the first time the patient or a family member has had to confront the possibility of death for themselves or a loved one.

Some patients (or their caregivers) may be empowered, engaged and researching options, but many don’t have the physical or emotional energy to do so.  At this point, few patients are thinking about second opinions, mutation testing, or clinical trials.

The problem with waiting for metastatic lung cancer patients to become empowered and engaged is that the majority won’t live a year if they can’t access the newest treatment options. However, if they get educated about their options, consult with a knowledgeable oncologist, and are eligible for newer treatments or clinical trials, their lifespan may be years longer.

You might ask, how could this be true?

The landscape of personalized medicine and new lung cancer treatments is changing fast, and more stage IV lung cancer patients are living longer.  Unfortunately, due to the pace of that change, not all healthcare providers who treat lung cancer are current on the newest treatment options. Some oncologists do not test their patients’ adenocarcinoma lung cancer tumors for EGFR or ALK, even though NCCN and other respected guidelines recommend it.  Even research oncologists at NCCN facilities can’t track every new clinical trial for lung cancer.  And, sadly, some healthcare providers simply believe that because metastatic lung cancer is not curable, there’s no point in treating it.

The fact is, most metastatic lung cancer patients (or their trusted caregivers) will need to become engaged and empowered if the patients want a better chance at survival.  Many will need help to do this, either online or offline.

The #LCSM Chat on October 23 will explore how the lung cancer community might help metastatic lung cancer patients become interested in and knowledgeable about second opinions, mutation testing, and clinical trials. Your moderator Janet Freeman-Daily (@JFreemanDaily), a stage IV lung cancer patient who currently has No Evidence of Disease in a clinical trial, will offer the following topics for discussion:

T1:  How can we help a stage IV lung cancer patient understand the need for 2nd opinion when their doctor offers no treatment?

T2:  How can we help a stage IV adeno lung cancer patient consider EGFR & ALK mutation testing if their doctor has not done it?

T3:  How can we help a stage IV lung cancer patient consider targeted therapy clinical trials if they have a targetable mutation?

We look forward to seeing you in the chat! To participate in the chat, remember to include #LCSM in all your tweets, or use a tweetchat tool like tchat.io with that hashtag (more on that here).

Third Time’s a Charm

Today I celebrate my three-year cancerversary. It was May 10, 2011, when biopsy results confirmed my lung cancer diagnosis.

My life has evolved quite a bit since that day. My first cancerversary in 2012 fell two days after my sixth (and last) dose of second line chemo, and a month before my second series of radiation treatments. I was stage IV, continually felt like I had the flu, and though hopeful, didn’t feel much like celebrating. My second cancerversary in 2013 fell sixth months into my current clinical trial. I had achieved No Evidence of Disease (NED) and focused on enjoying life, but was nearing the timeframe when others who took the same experimental drug typically progressed. I flew to Denver every 4 weeks for trial check-in, juggled side effects of treatments past and present, and felt anxious about the future.

My third cancerversary is different. Life no longer revolves around cancer treatment. I’m 17 months NED in my clinical trial, and the drug’s side effects are minimal. My visits to Denver every other month seem almost routine, with only a hint of scanxiety. I’m exercising most days, rebuilding my fitness level, and starting to lose the 60 pounds gifted to me by various cancer treatments. Physically, I’m less a cancer patient and more an out-of-shape fifty-something.

My life still revolves around lung cancer, but not in the same way. I’m busy most days with lung cancer patient advocacy. In addition to writing this blog for over a year, I moderate Lung Cancer Social Media (#LCSM) chats on Twitter and work with lung cancer nonprofits, healthcare professionals, researchers, and patient advocates to raise awareness and support of lung cancer issues such as benefits of mutation testing, screening with low dose CT, living with metastatic cancer as a chronic illness, and the need for increased research funding.

To celebrate this cancerversary, my husband and I spent a quiet vacation week in Whistler BC. The drive from Vancouver along Howe Sound into the volcanic coastal range (via Sea to Sky Highway) showcased Mother Nature at her finest. I enjoyed exploring Whistler Village and surrounds as well as writing. As I watched the snowboarders walking down from the Blackcomb gondola, I did feel a twinge of regret that I can no longer ski. However, I later reveled in the warm sun as I walked the mile around Lost Lake (2200 feet elevation!) at a moderate pace, with only a few stops–I could not have done that in 2011, 2012, or 2013.

So life has returned to an acceptable state of normality. At this point in time, a headache is just a headache—it doesn’t automatically trigger anxiety about brain mets. I look forward to seeing my son graduate from college next May. I accepted a commitment in fall 2015 without first asking if I’d be alive on that date. I know my targeted therapy cancer pill likley will fail me someday, but I now can go weeks without thinking about that.

As Trillian says in Hitchhiker’s Guide to the Galaxy:
“We have normality. I repeat, we have normality. Anything you still can’t cope with is therefore your own problem.”

Howe Sound, British Columbia

Sea to Sky Highway, British Columbia

Lost Lake Outflow near Whistler BC

Lung Cancer’s Highlights from 2013 and Predictions, Hopes for 2014 – The First LCSM Tweetchat of 2014

This is a reblog from the #LCSM Chat blog (posted with permission). I changed the post to include links to the blog sites where comments about the chat should be posted.

Lung Cancer’s Highlights from 2013 and Predictions, Hopes for 2014 – The First LCSM Tweetchat of 2014

By Dr. H. Jack West 

The end of a year is always a time for reflection on the past alongside hope for the future, so our upcoming lung cancer social media tweet chat on twitter (#LCSM on twitter) will focus on everyone’s thoughts of the most significant developments in lung cancer over the past year, along with predictions and hopes for the coming year.

Please join us Thursday, January 2nd at 8 PM Eastern, 5 PM Pacific on Twitter, using the hashtag #LCSM to follow and add to our one-hour chat with the global lung cancer community, where we’ll cover the following three questions:

1) What do you think were the biggest advances in lung cancer in 2013?

2) What do you predict as key changes in lung cancer in the upcoming year?

3) What is your leading possible hope/goal for the lung cancer world in 2014?

It should be a lively, upbeat discussion, so please join us Thursday, or share your thoughts on the #LCSM Chat blog or on Cancergrace.org before or after the live event. Hope to see you there!

Tweets for #LCAM2013 Week 3 — Hope for Lung Cancer Patients

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 third week of Lung Cancer Awareness Month (#LCAM2013) focus on HOPE for lung cancer patients: early detection, advances in treatment, personalized medicine, and research results.  For Week 1 tweets, click here.  For Week 2 tweets, click here. Facts for all weeks of #LCAM2013 are collected here.


November 18 tweet
National Lung Screening Trial showed low-dose helical CT scans can lower mortality from #lungcancer at least 20%. #LCAM2013 #LCSM

National Cancer Institute. (n.d.). National Lung Screening Trial (NLST). Retrieved 17-Nov-2013 from http://www.cancer.gov/clinicaltrials/noteworthy-trials/nlst.

November 19 tweet

Newly-diagnosed #lungcancer patients should consider getting a second opinion about diagnosis and treatment. #LCAM2013 #LCSM

Seattle Cancer Care Alliance. (n.d.). For Newly Diagnosed:  Seeking a Second Opinion. Retrieved 17-Nov-2013 from http://www.seattlecca.org/newly-diagnosed-second-opinion.cfm.

November 20 tweet

Lobectomy performed by video assisted thoracoscopic surgery results in shorter hospital stay, quicker recovery. #LCAM2013 #LCSM

Swanson, SJ et al. (2012 Apr). Video-assisted thoracoscopic lobectomy is less costly and morbid than open lobectomy: a retrospective multiinstitutional database analysis. The Annals of Thoracic Surgery; 93(4):1027-32. http://www.ncbi.nlm.nih.gov/pubmed/22130269

Nicastri, DG et al. (2008 Mar). Thoracoscopic lobectomy: report on safety, discharge independence, pain, and chemotherapy tolerance. The Journals of Thoracic and Cardiovascular Surgery; 135(3):642-7. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/18329487.

November 21 tweet

Patients whose #lungcancer tumors had driving mutations and who received targeted therapy live longer. #LCAM2013 #LCSM

Kris, M.G. et al. (2013, Oct 29). “Treatment with Therapies Matched to Oncogenic Drivers Improves Survival in Patients with Lung Cancers: Results from The Lung Cancer Mutation Consortium (LCMC).” 15th World Conference on Lung Cancer, Sydney, Australia: Abstract PL03.  Read abstract here.

November 22 tweet

Patients with #lungcancer who participate in #cancer clinical trials live longer. #LCAM2013 #LCSM

Chow, CJ et al.  (2013 Apr). Does enrollment in cancer trials improve survival? Journal of the American College of Surgeons 216(4):774-80. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/23415510.

November 23 tweet

Immune-based therapy and clinical trials show potential for #lungcancer treatment. #LCAM2013 #LCSM

National Cancer Institute. (n.d.)  Expanding the Playing Field: Immune-Based Therapy Shows Potential for Lung, Other Cancers. Retrieved 17-Nov-2013 from http://www.cancer.gov/clinicaltrials/results/summary/2012/PD-1-immunotherapy0612.

Gillis, Bonnie. (2013 Sep 29). PD-L1 Inhibitor Delivers Rapid, Durable Responses in Advanced NSCLC. Retrieved 17-Nov-2013 from http://www.onclive.com/conference-coverage/ecco-esmo-2013/PD-L1-Inhibitor-Delivers-Rapid-Durable-Responses-in-Advanced-NSCLC

November 24 tweet

Palliative care improves survival and quality of life for advanced #lungcancer patients. #LCAM2013 #LCSM

National Cancer Institute. (n.d.). Palliative Care Improves Survival, Quality of Life in Advanced Lung Cancer. Retrieved 17-Nov-2013 from http://www.cancer.gov/clinicaltrials/results/summary/2010/early-palliative-care0910.

Making Space and Losing Memories

Today my college and grad school textbooks become property of Friends of the Library. I hope they find another loving home while raising funds for library activities.

The books were cleared out to make space for exercise equipment, which helps me combat the side effects of cancer treatment and helps other family members stay healthy. I’m not using the books, and if I hold onto them too long, they’ll become obsolete and useless to anyone else (if they haven’t done so already).

I know I will never have cause to do complex variable calculus, satellite design, digital signal processing, systems engineering, microwave remote sensing or data fusion again. However, it’s still hard to let go of those books. It’s like shutting a door on twenty years of my life.

Part of me fears that when my cancer progresses and my brain gets fuzzier, I will forget my years of aerospace engineering. Not all of it was good, but lots of it was fun. I’m feeling anticipatory grief. Guess I need to find a less bulky way to stimulate my recall of those times.

Just as I have to clear physical space to help my physical body cope with lung cancer, I must clear mental space for new activities that support me in this phase of my life. Now writings on cancer genetics, cell biology, and new treatment discoveries fill my thoughts and give me hope.

The decluttering continues.

The Basics of PD-1

Several clinical trials for lung cancer (as well as other cancers) are pursuing therapies based on the PD-1 pathway of the immune system. These trials can usually be found on clinicaltrials.gov by searching with keywords such as PD-1, PDL-1, or PD-L1. Sometimes these therapies are referred to as anti-PD-1 or anti-PD-L1.

PD-1 (PD stands for Programmed Death) is part of an immune system “checkpoint” pathway that, among other functions, helps turn tumor suppression on or off. PD-1 is actually a protein expressed on the surface of certain cells in our immune system; it is NOT a mutation, but rather something inherent in everyone’s immune system. The cells of interest in these trials are activated T cells, but PD-1 is expressed on other types of cells, too. The PD-1 protein is a receptor, which means another molecule can bind to it.

PD-L1 is a protein of the surface of some (but not all) tumor cells. It is a ligand of PD-1 (hence the “L” in its name), which means it binds to the PD-1 protein. When PD-L1 binds to PD-1, it tells the immune system to ignore the tumor cells. PD-1 has one other known ligand (surprisingly named PDL-2).

PD-1 and PD-L1 therapies aim to blockade the PD-1 pathway so the immune system can better attack cancer tumors. The drugs used are designer molecules that bind to part of the PD-1 pathway and block its activity. Some drugs bind to PDL-1 so it can’t bind to PD-1. Other drugs bind to PD-1 to prevent ligands from binding to it. Both approaches aim for the same effect: keep the PD-1 pathway from telling the immune system to ignore tumor cells.

Not everyone responds to PD-1 pathway therapies. Early trial results show lung cancer patients had response rates on the order of 10% to 18%. Researchers are studying whether biomarkers — proteins such as PD-L1 on the surface of immune system or tumor cells — might indicate which patients will respond well to PD-1 therapies. That is why some trials (but not all) require a biopsy for testing before accepting the patient into the trial.

Since part of the immune response for suppressing tumors involves inflammation, participants in trials based on the PD-1 pathway often find their tumors will grow somewhat when they first start the therapy. A few lung cancer trial patients experienced serious or fatal pneumonitis, a lung inflammation.

PD-1 therapies are promising enough that at least four drug companies (Bristol-Myers Squibb, Roche/Genentech, Medimmune and Merck) are pursuing them in lung cancer trials. Because they modify the immune system, the hope is that these drugs will continue working longer than targeted therapies do.

Please let me know if you find this sort of article helpful.

Edited 2013-09-12 12:53 PM PDT to add information.

A Measure of the Seasons

Today is our family’s Cider Making Day, one of several at our home.

Apple harvest in our Western Washington home orchard runs August to October. We have six varieties of apples that ripen at different times. Yesterday hubby Gerry and son David harvested about 60% of our Elstar and 50% of our Liberty apples, and collected apples dropped from the Chehalis and Spartan trees. About 100 pounds of these will go to the local foodbank. We’ll use the rest for cider and storage.

The first step in making apple cider at our house is washing off kaolin clay, a natural mineral Gerry sprays on our apples to make them less attractive to apple maggots and coddling moths. Next, we quarter the apples and cut out any bad spots (some maggots and moth larvae still sneak in)—this takes the two of us two to five hours, depending on how much cider we want to make and how much trimming the apples need. Gerry and David then press the cider outside in a custom-built wooden cider press. The product tastes amazingly like eating a fresh, tree-ripened apple. We’ll have gallons to last us through the coming year.

Washing apples for cider

The cider press

Making apple cider is a measure of the seasons in our house – we’ve been doing it about 15 years, since the trees Gerry planted in 1994 started bearing enough fruit. Over the past 29 months, it’s become a measure of my cancer seasons as well.

In September 2011, I had recently finished my first line of treatment (seven weeks of concurrent chemo and radiation). I was tired and weak. Instead of standing at the sink to cut apples, I had to sit on a stool, and I only lasted about an hour or two. I had a recurrence in October 2011. It was a terrible shock.

In September 2012, I had recently finished my second line of treatment (five months of chemo followed by six weeks of radiation). I was fatigued, but able to soldier through an entire batch of cider apples while sitting. I had a recurrence in September 2012. It was an unpleasant surprise, but I had a plan, and entered my current clinical trial shortly afterwards.

In September 2013, I’m in my third line of treatment (just finished my tenth month on Xalkori). My legs, feet and hands are achy from cumulative neuropathy and edema from treatments past and present, but I have energy and can once again stand at the sink and enjoy cutting apples while discussing matters great and small with my mate for hours. My next scan in is October. If I have another recurrence (and it will happen eventually), I know I’ll either have local treatment of the metastasis, or switch to another trial at University of Colorado.

Next year, my family will make apple cider again. Life goes on.

Coping with Side Effects

I have a 20-pound lifting limitation on my right arm from radiation damage. My right brachial plexus — the nerve bundle that controls the right arm — took a full dose hit last summer.

I take an engineering approach to such limitations. I find myself looking at boxes I need to move and thinking, “If I take out these books, then the box is only 40 pounds, and if I divide that by two arms …”

I do not tell my radiation oncologist about these moments.

I hope he’s not reading my blog today.

Still Dancing — OK, Walking — with NED

My August 12 PET-CT scan still shows No Evidence of Disease (NED). Woohoo! Having completed 10 cycles on Xalkori without progression, I now go to Denver at 8-week instead of 4-week intervals for my ROS1 clinical trial, and have labs drawn at my home clinic between Denver visits.

I have muddled my way through hamstring rehab and am back to VERY basic strength training with light aerobic exercise on the recumbent bike and treadmill. The best description I can find for my state of fitness is “wimpy.” If I walk one city block here at sea level at a moderate pace (about 2.5 mph), my breathing speeds up a good bit and my heart rate rises to 140! I have to use an oxygen compressor to walk in Denver without gasping or stopping after 500 feet. The persistent Xalkori-induced edema isn’t helping.

The physical therapist tells me it will take a looooong time to rebuild the muscles that have atrophied due to disuse and cancer treatment. I made sure she gave me clear guidelines about pacing my recovery, because, as you all know, I’m SO good at taking things slow.

I’ve developed something called “trigger finger” in my hands, and the oncologist says he doesn’t think it’s related to taking Xalkori (although edema might play a role). Because of this and some other issues, I’ve scheduled an appointment with my primary care doctor to discuss whether my thyroid is starting to misbehave in response to the radiation dose it received last year. However, other non-cancer conditions could cause my symptoms, too. Rather than diagnose myself (I know, I know — why stop now?) I’ll hear what my PC doc thinks.

So, here I am, just taking life slow, glad I’m around to enjoy the magnificent Pacific Northwest summer. I’ll be speaking at the World Science Fiction Convention in San Antonio this year over Labor Day, then mostly hanging around the house attempting to declutter and find the floor of my den once again.

Wait …

Wouldn’t it be wonderful if I could actually HIKE somewhere next year? Or take a cruise in the Mediterranean? Or …

Moves in the Cancer Endgame

My dad taught me to play chess when I was small. I learned the game fast, and could soon beat other kids older than me. However, when I faced an opponent who was much more skilled than I, my attention eventually wandered. I lost the endgame because I’d lost patience.

A chess game transitions to the endgame when few pieces are left on the board. Whatever strategy positioned pieces prior to the endgame becomes irrelevant. The pawns, which initially were the least powerful pieces, become important.

Recently I was playing a much more highly-rated player online (thank you, Nancy Kress) and realized something in my attitude had changed: I had developed patience for the endgame. Even though I had been outmaneuvered and did not possess enough pieces to win, I kept looking for my next move. I wanted to keep the game going as long as possible.

Metastatic lung cancer is a tough opponent, and the odds favor it winning. Several powerful treatments didn’t finish it off. I haven’t many therapy pieces left. But I keep searching for my next move, even if it can’t give me victory. Clinical trials are now my best pieces in the cancer endgame. I want to keep playing — and living — as long as I can.

Cancer taught me patience for the endgame. Maybe someone else will learn from how I played.