Lung Cancer Social Media (#lcsm) Tweetchats

The next lung cancer social media tweetchat will be Thursday September 26, at 5 PM Pacific. It will be moderated by oncologist Dr. Jack West. The topics this time (as posted by Dr. West here) will be:

1) What are leading barriers to clinical research? Which ones might be addressed by connecting members of the lung cancer community online?

2) Can patients & caregivers share data, e.g., Patients Like Me, to facilitate better understanding & generate more interest from pharma companies in studying lung cancer patient groups (potentially narrow ones like those with ROS-1 rearrangements)?

3) Can we lower barriers by making it easier for patients to learn about & travel to participate in trials? Share air miles to help people travel for trials? Offer housing as a network? Telemedicine visits to minimize travel?

Below is an introduction to tweetchats, #lcsm and how to participate. Hope you will consider participating!

What is an #lcsm tweetchat?

On Twitter, the hashtag #lcsm stands for Lung Cancer Social Media. People use that hashtag in tweets every day to flag tweets that talk about lung cancer treatment, research, funding, or patient issues.

An #lcsm tweetchat is a set time when people interested in lung cancer are all on twitter at the same time with a moderator (for #lcsm, that’s Dr. Jack West) to chat about lung cancer. The tweetchat lasts one hour. All tweets that include the #lcsm hashtag during the specified hour will be included in the tweetchat transcript.

Hundreds of #lcsm tweets will be tweeted during the chat. Participants in the tweetchat have included researchers, oncologists, palliative care specialists, surgeons, advocates, counselors, caregivers, family members, and patients who are working or coping with lung cancer.

When and where does the #lcsm tweetchat take place?

The next #lcsm tweetchat will be held Thursday, September 26, at 8 PM Eastern, 5 PM Pacific. After that date, the intent is to hold #lcsm tweetchats every other Thursday at that same time (8 PM Eastern, 5 PM Pacific).

What does a tweetchat look like?

You can see the content of the first four #lcsm tweetchats here:

July 25, 2013
August 8, 2013
August 22, 2013
September 5, 2013

What will people talk about in the tweetchat?

Most of the chat will focus on the questions posed by moderator Dr. Jack West. He usually posts the topics on several days before the chat.

You will also see tweets that introduce participants and acknolwedge the presence of other participants. Occasionally someone will pop in and ask whatever question is on their mind, but due to the rapid pace of the chat, questions unrelated to the topics might not get answered.

How do I participate in a tweetchat?

You will need a Twitter account to view or participate in the tweetchat.

Although you can follow this chat on Twitter by filtering for the #lcsm hashtag, you’ll find it much easier to keep up by following it on a dedicated webpage. To do this:

1. Enter the URL “” in your browser

2. Enter in the hashtag #lcsm in the box on the screen, and click “Start Chatting”

3. Click on “Sign in to get an in-page tweet box” just below the white box, then click “Authorize App” on the next screen to login to Twitter. You’ll then be redirected back to the page. This will allow you to type your tweets in the textbox at the top of the page, and the #lcsm hashtag will be automatically added to the tweet to make sure your tweet gets included in the chat.

4. Click on “hide retweets” (just below the blue “Tweet” bar). Many participants will retweet parts of the chat; hiding retweets will make it easier to identify tweets with new content.

Everyone introduces themselves at the beginning. Those who are just lurking enter a tweet that says only “#lcsm” to announce their presence.

Dr. West then presents topics for discussion and assigns each topic a number (T1, T2, etc.). Once he tweets a topic, people respond to it with comments and questions. It helps others track the conversation if you put the topics number at the beginning of your tweet.

Changing My Mind: Cancer Side Effects, Phase 2

Cancer and its treatments cause cognitive and psychological changes for some patients. Even if we aren’t aware of a physical reason for it, it’s just as real as neuropathy and tissue damage.

The cognitive side effects of cancer treatment are known in the media as “chemobrain,”
though the symptoms can be caused by more than just chemotherapy. My cognitive symptoms are typical: problems with memory, attention, multitasking, word finding. I not only can’t remember details of an event, I don’t remember the event even happened. I lose track of what I intend to say in the middle of a sentence. When my son steps into the room to ask me a question, just noticing his presence is enough for me to lose track of what I’m typing. I tell my husband to give me a banana, when what I tried to ask for was milk.

Some changes wax and wane with treatments. The prednisone taken for lung inflammation gives my entire family a new appreciation of “Roid Rage.” The gabapentin taken for nerve pain and sleep serves me brain fog with breakfast.

Some changes can be due to the cancer itself. Tumors and blood clots in the brain or lungs can reduce oxygen supply to the brain and interfere with brain function. I’ll deal with that if it happens to me (knock on my wooden head).

Some changes which I had attributed to treatment-related fatigue persist even as fatigue improves. My patience runs thinner than it did before cancer treatment. Sometimes I become irritable or angry for no discernible reason. Towards the end of the day, I have more difficulty seeing the other side of a disagreement or bestowing benefit of the doubt. I generally try to be home and winding down by 8 PM so I don’t “hit the wall” and run out of positive energy amidst unsuspecting people.

Some cognitive changes are positive ones. My cancer journey gives me a greater understanding of those who face challenges navigating physical barriers, communicating thoughts clearly, or remembering instructions for a task. When someone with a chronic illness tells me they don’t have the energy for some activity, I know exactly what they’re talking about.

The largest change I see in me is … a change in perspective. I feel a drive to LIVE each day, not just let it meander by me. I’m more inclined to be choosy about how I spend my remaining time (however long that might be) and with whom I spend it. I’m less willing to be with people who dwell on small talk, speak ill of others frequently, or lack compassion. I seek out positive, creative people who are willing to reveal their true selves, share mutual interests, and strive to make a difference in the world. That’s the kind of person I want to be.

So, cancer is changing my mind. I’m living more consciously than ever before. Bi-monthly PET scans remind me the Fates could cut my lifeline at any moment. I intend to make that lifeline as strong and as shiny as possible, for as long as possible.

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.

Being in the Right Place

Sometimes a notion pops into my head out of the ether, and I follow it. It might take the form of an impromptu decision to turn left instead of right, or an urge to contact someone with whom I haven’t spoken in ages. I used to dismiss such instincts, but I’ve learned to follow them. Sometimes I end up being in the right place for something … or someone.

This week it happened again.

I was on my way home from Seattle with son David when I suddenly remembered our local blood center was nearby. David and I used to donate together as often as allowed before I was given a permanent deferral due to my metastatic cancer. David wanted to donate, so I dropped him at the front door and parked to wait.

I worked on a writing project, periodically opening and closing car windows to adjust the temperature. Once I overheard fragments of a conversation in the car next to me as I was closing my window, but from my compact SUV I couldn’t see face of the sole occupant.

When I stepped out to check on David, who was taking longer than usual, I noticed the guy in the neighboring car was wearing medical scrubs. When I was walking back to my car (still sans David), I remembered who he was: he was the nurse who had given me my permanent deferral for metastatic cancer last year. He’d handled my blood donation several times.

I walked over to the driver’s side of his car and said hello. He looked up, his face brightened as he recognized me, and we exchanged pleasantries.

Then he told me he’d just had a phone call from his best friend, who today learned she had colon cancer and was waiting for biopsy results on possible liver metastases. He didn’t know how to handle the news.

We talked until he had to go back to work. He called me the next day and we talked for an hour about cancer, loss, and what do you do with news like that?

“Funny,” he said. “I’ve been thinking about you for some reason over the past couple of weeks. It’s almost like you were meant to be there after I got that call.”

And that’s why I follow my instincts.

Telling My Child of My Cancer

When I first heard my lung cancer diagnosis in May 2011, one of my gut reactions was, “How do I tell my kid?”

I had better reasons than most cancer patients to be wary of telling my adopted son about my diagnosis. Yes, 25-year-old David was on the autism spectrum, which among other things meant he had issues with processing auditory inputs, deciphering the meaning of communications, working memory, and interpreting emotions. However, a more daunting challenge for him was personal history: his birthmother (my cousin) had died of brain cancer when he was three, and her eldest brother had died of the same cancer in late 2009.

How do you tell someone he might lose a second mother to cancer?

I hesitated to say anything to David before the diagnostic process and staging were complete. Struggling with my own emotions and denial, I felt I had to be able to solidify my perspective before I could present my situation in a hopeful manner to anyone else. For days I fretted about how to approach this task. Even when I was hospitalized with obstructive pneumonia immediately after my diagnostic mediastinoscopy surgery, I still said nothing about cancer to David. I told myself I didn’t want to disrupt his spring quarter finals.

The truth was, I still didn’t know what to say.

Once David was done with his school quarter, however, he could not avoid seeing me around the house in clear discomfort, or seeing Dad flush the PICC line in my left arm every night. I doubted even his generally internal focus could miss recognizing that something was wrong with me.

Finally, my husband Gerry and I asked David to join us in the living room for a family discussion. I feared that would trigger anxiety for him, because such meetings rarely happened in our house, but he seemed calm. I fought to stay tear-free while talking.

“David,” I said, “I have lung cancer. It’s aggressive, and advanced, but the doctors think it’s curable. I’m currently on antibiotics for pneumonia caused by the cancer. When I’m recovered from the pneumonia, I’ll start chemo and radiation, which is considered aggressive cancer treatment.”

I watched his reaction carefully. David quietly shifted in his chair while I talked, and scanned various points in the room — his standard conversational behavior. So far so good.

Gerry spoke next. “We want to be honest and open with you about this. We won’t lie to you. Do you have any questions?”

He did ask some general questions. We answered each one truthfully, but briefly. He sat silently for a minute, then seemed to reach some sort of decision.

“You’re treating the cancer aggressively?”


“You’re not giving up?”

“No.” A beat. “Are you OK with this, David?”

He looked at the ceiling, then back at the floor.

“I’m OK. Besides, I already know how to find new parents.”

I burst out laughing. He looked at me and flashed that charming grin. He was, indeed, OK.


Today, over two years later, I asked David what he remembered of that day. I was hoping for confirmation of my memory and interpretation of events. I was surprised to learn that David only remembered he was disappointed.

Apparently David had tried to communicate something that day, and I didn’t get it right. He wanted me to use a recognizable phrase as a code word if my cancer took a turn for the worse. The phrase he chose was, “It’s a trap!” I got the science fiction reference — it was spoken by Admiral Ackbar in “Star Wars VI: Return of the Jedi,” when the heroic rebels were hit with a surprise attack by the evil Empire — but I didn’t capture the proper inflection. I now have an assignment to rewatch the movie so I can practice Admiral Ackbar’s pronouncement properly. “It’s a TRAP!

It’s good to have goals in life. And a kid who can surprise me.

A Blue Sky Cancer Cure

New treatments for cancer are being discovered at an ever increasing rate. Unfortunately, no single treatment can yet successfully treat all cancers that arise in the lungs, much less cancers that arise in all parts of the body. Cancer is not one disease, but many, featuring many types of cancer cells with different (and sometimes several) mutations in those cells, originating in various parts of the body with different cell structures, and threatening different bodily functions. A single tumor can even contain more than one type of cancer cell. There are as many different cancers as individuals who have cancer.

Here’s a science fiction concept:

Let’s invent a artificial intelligence device that enters the body via a single small injection, travels through the blood stream, locates all cancer cells, determines their characteristics, surveys them to determine how many are susceptible to drug A, drug B, surgery, radiation, or nutritional supports, then reports out to the doctor on the optimal treatment for this individual’s cancer.

Or, better yet, the device completes the cell inventory, instructs the immune system how to eliminate each type of cancer cell without harming healthy tissues, and reports out to the patient and their doctor on whatever assistance the immune system needs to do it. Maybe an alert shows up on the patient’s wristband or Google glass and reads, “Drink 0.25 liters of green tea with 3 ml lemon juice daily for 2 weeks, avoid shrimp, eat an oreo before bed, and get radiation treatment for your liver.”

Yeah, that should be easy.

Yes, Sheldon Cooper, that’s sarcastic.

NTRK1: a new oncogene and target in lung cancer

A new driving mutation in lung cancer called NTRK1 has been found by researchers from University of Colorado and Dana-Farber Cancer Institute. It joins the family of driving mutations like EGFR, ALK, ROS1, and RET. What’s particularly interesting for this mutation is that an exisiting drug appears to target it (in preclinical studies). Note the linked article does NOT say the mutation is specific to NSCLC.

I’m hopeful we’ll have an approved FDA treatment for this mutation more quickly than usual (though I’m not holding my breath).

NTRK1: a new oncogene and target in lung cancer cancer/

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 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.