The start of something big …

I’m excited to be one of the handful of patients speaking in a public forum tomorrow evening at The Broad Institute in Boston, Massachusetts (well, technically, Cambridge). We’ll be sharing our “Lessons for Creating Patient­‐Researcher Partnerships to Accelerate Biomedical Progress.” I get to talk about the founding of the ROS1ders and the Global ROS1 Initiative.

A host of engaged patients, cancer researchers, and other healthcare types, among them the American Society for Clinical Oncology and the Biden Cancer Initiative (which grew out of the Cancer Moonshot) will be there. This could be the start of something BIG. At a minimum, it will spontaneously generate a HUGE group hug with advocate friends old and new.

Coincidentally, we’ll be staying at a hotel just a few blocks from my old MIT dorm during MIT Reunion Weekend.  I’ll be too late for reunion festivities–attending the ASCO Annual Meeting last week took priority.  Still, I’ll wander over on my knee scooter (still healing after foot surgery) in the 90º-plus heat.  I ought to be able to reflect on my crazy undergrad days on Third East in the East Campus dormitory for at least five minutes before seeking refuge inside an air-conditioned building.  Next year I plan to indulge in my 40th MIT Reunion–I didn’t expect to live long enough to see it, and I’m going to take full advantage of the the opportunity!

Lung Cancer Update: August 2016

I haven’t blogged much about my cancer status or advocacy activities in 2016.  Not to worry — I’m still dancing with NED (No Evidence of Disease), still taking Xalkori (crizotinib) for my stage IV lung cancer, and still advocating for improved outcomes and quality of life for lung cancer patients.  Life has just been amazingly, overwhelmingly busy up through July, and my blogging became one of the dropped balls in my juggling act.

How busy, you ask?  Here’s a summary of the past nine months. The numbers are estimates, as I had trouble reading the small print I had to use on my calendar to fit everything in.

  • Traveled 54 days for advocacy and writing
  • Traveled 28 days for my clinical trial in Denver (and got snowed in once)
  • Gave 25 formal presentations or informal talks
  • Presented a poster at a medical conference (in AACR Scientist-Survivor Program)
  • Attended 7 medical conferences
  • Attended a 5-day writers’ retreat (wrote a new short story!)
  • Participated in working groups for 3 healthcare agencies (including the National Cancer Institute)
  • Attended 3 science fiction conventions
  • Worked on 2 patient-initiated research projects (ROS1, and biobanking tissue of deceased patients)
  • Consulted for 2 pharmaceutical companies
  • Moderated a joint #LCSM-National Cancer Institute Google Hangout on Air
  • Advocated at the US Capitol for more healthcare funding
  • Captained a team for a lung cancer fundraising walk
  • Co-moderated biweekly #LCSM twitter chats

And on the personal side …

  • Travelled 33 days with family
  • Purged unneeded books, college class notes, household items and cruft from 3 rooms
  • Helped my son find and move into a new apartment (twice)

Sometimes I was barely home long enough to unpack,  pile my collected travel papers on the floor, repack, and perform a couple of necessary household chores before flying out again.  Glad I’ve had a few weeks at home in July and August to decompress and spend time with my family.

While compiling the statistics for this post, I begin to realize why I’ve been so fatigued. I’ve never been particularly good at taking things slow. The above list demonstrates that I must fine tune my advocacy work in order to focus on my top priorities.  I need to say “no” to some opportunities so that I can have more time to process what I’ve learned and write. Juggling four conferences in April left me drained–one conference a month should do.  As my husband has reminded me more than once, I am a cancer patient as well as an advocate.

I’ve been attempting to exercise regularly, give myself enough hours in bed to feel rested, eat healthy, and stay hydrated.  Over the past nine months, my medical team and I have also made some tweaks to my treatment plan.

Less frequent scans. Sometime last year, I became eligible to increase the time between my scans for the clinical trial, but I was too anxious about my cancer possibly coming back to do it.  However, a long talk with fellow lung cancer activist (and 11 year survivor) Linnea Olson at the World Conference on Lung Cancer in September made me realize I was having a LOT of scans over the past years.  I realized reducing my exposure to radiation was probably a good thing.  So, as of November 2015–at three years of NED–I asked Dr. Camidge to schedule my scans for every sixteen weeks instead of every eight weeks (I wasn’t confident enough to go with every 24 weeks).  I’ve also switched from eyes-to-thighs PET-CT scans to chest and abdomen CT scans, primarily because insurance was denying coverage of the PET-CT scans.

Change of blood thinners.  At the beginning of 2016, I realized the frequent labs required to monitor my warfarin dose would be difficult to accommodate with all my upcoming travel. My Denver and Seattle docs all agreed that my pulmonary embolism (remember that pesky blood clot in my lung’s artery?) probably didn’t represent an increased risk of blood clots from cancer, but instead was just a pile of fibrin sheaths that had sloughed off my power port’s catheter (I’m really good at growing fibrin sheaths).  So we switched me to a different blood thinner (Xarelto) that doesn’t require regular blood tests.  The downside of Xarelto is that it doesn’t have an antidote if I happen to overdose.

Crizotinib is approved! Do I stay in the trial? In March 2016, the FDA approved my clinical drug crizotinib for ROS1-positive lung cancer patients–YAHOO!  This meant I had the option of leaving the trial and eliminating my travel to Denver while continuing to stay on the wonderful drug that’s keeping my cancer in check.  I thought long and hard (with the help of a great blog from my friend Dann Wonser). Eventually decided I wanted to keep seeing one of the world’s top lung cancer docs (Ross Camidge) in Denver, despite the cost and hassle of travel. I love being a part of the University of Colorado (CU) lung cancer SPORE, and I’ve grown close to many people at CU. The trial will likely continue for a few more years; the crizotinib trial for ALK-positive lung cancer started in 2008 and is still ongoing. So. I’ll keep traveling to Denver for the foreseeable future–which is much shorter nowadays than when I was 20.

Regaining my balance.  After my three falls in nine months, I had several sessions of physical therapy to strengthen my leg and core muscles. It improved my balance and helped me get back into exercising.  Alas, I fell again at a conference earlier this month.  **grumble** I’ve become a klutz in my old age.  At least I’m around to see what my “old” looks like.

Dose reduction of crizotinib. I’ve struggled with swelling of my legs and belly–edema, a known major side effect of crizotinib–since my second month on the drug. Alas, it’s gotten worse with time.  As of January, I couldn’t bend my ankle at the end of the day if I didn’t wear my thigh-high compression hose and take a diuretic (Lasix).  My weight can go up by eight pounds in two days solely from water retention. I’m told edema is the reason patients most often cite for stopping crizotinib therapy.  Dr. Camidge first offered me a dose reduction of crizotinib last year (from 250 mg twice daily to 200 mg twice daily), but I didn’t want to reduce the dose while I was also increasing time between scans–much too anxiety-making for me.  However, in July 2016 I’d had enough of puffy feet and legs, and decided to try the lower dose. Dr. Camidge says he wouldn’t lose a second of sleep over the dose reduction, because he’s seen the lower dose work for many patients. I think it’s helping me.  I can always increase the dose again in the future if necessary, although I’d have to leave the clinical trial if I did.

I’m de-ported! I’ve kept my power port while on oral meds, although I only use it for blood draws and scan contrast. The docs have always said it’s my choice, so I’ve left it in because it was easier than getting stuck every month (and my veins tend to misbehave).  At my June 2016 clinical trial appointment, however, my power port decided it would cooperate with neither the blood draw nor the scan contrast. I’ve had the little beastie since December 2011, which is a good long run, but I finally decided it was time to pull it out.  The surgeon who installed it was thrilled to be taking it out of a metastatic lung cancer patient more than four years later. So, as of July 21, I am no longer Borg.  Now that I no longer have a catheter in a vein, I probably won’t be forming piles of fibrin sheaths in my pulmonary artery.  My docs say if my next scan in October shows my pulmonary embolism looks good, I may even be able to go off blood thinners. Wahoo!

Coping with chemobrain.  My continuing fatigue and mental fuzziness are a great frustration. Caffeine and exercise help, but don’t eliminate the problem. I finally asked my oncs what could be done, and they both suggested Ritalin, a stimulant commonly used to increase ability to attend for people who have ADHD.  I take 5 mg twice daily on days when I need energy and focus (especially useful at conferences and speaking events).  However, it masks how tired I truly am, and results in something of a crash when I stop taking it.  I’ll be visiting a neuro-oncologist soon to explore other medication options–Dr. Camidge mentioned Provigil (a narcolepsy drug) and Effexor (an antidepressant) as possibilities, and another patient said she found Concerta (long-acting Ritalin) helpful.

So, that’s what happening with me.  I promise to blog a bit more often so I won’t have as much news the next time.

Lung Cancer Town Meeting Sept 10: “Getting the Right Testing and the Right Treatment at the Right Time”

Town Hall graphic
If you or someone you know is a lung cancer patient or caregiver who wants to learn about “Getting the Right Testing and the Right Treatment at the Right Time,” check out this Lung Cancer Town Meeting in Chicago on September 10th (FREE in person or live online). I’ll be hosting several doctors from Northwestern’s Lurie Cancer Center AND my oncologist Dr. Ross Camidge.

AGENDA (Central Time)

9:30 – 10:00 AM Registration | Connecting With Other Lung Cancer Patients and Care Partners
10:00 – 10:45 AM Current and Novel Treatment Options for Lung Cancer
10:45 – 11:30 AM Understanding Biomarker Testing in Lung Cancer
11:30 – 11:45 AM Meet the Patient Panel
11:45 – 12:30 PM Lunch Provided
12:30 – 1:00 PM Resources and Strategies for Living Well With Lung Cancer
1:00 – 2:00 PM Interactive Q&A Session
This in-person town meeting is sponsored by the Patient Empowerment Network through educational grants from Helsinn, Genentech and Novartis, with additional funding from LUNGevity Foundation through an educational grant from Pfizer. It is produced by Patient Power in partnership with the Robert H. Lurie Comprehensive Cancer Center of Northwestern University and LUNGevity.  Thanks to Patient Power for inviting me to host it.
You can register by clicking here.  Hope to see you in Chicago September 10!

My 2016 WorldCon Schedule


Below is my MidAmeriCon II speaking schedule: a couple of cancer panels, a couple of space panels, and a reading (yes, something new). Come find me at the Kansas City Convention Center August 17-21 and say hello!

Living with Cancer
Wednesday 8/17/2016 14:00-15:00, 2206 (Kansas City Convention Center)
$£%* Cancer. Our panel talks about the experience of cancer, how it affected their writing and lives, and how we can support the fan community.
Janet Freeman-Daily, Rosemary Kirstein, Ms Pat Cadigan (M), Priscilla Olson

Reading: Janet Freeman-Daily
Thursday 8/18/2016 16:30-17:00, 2202 (Readings) (Kansas City Convention Center)
Janet Freeman-Daily

Defining Acceptable Risks in Space Exploration
Friday 8/19/2016 11:00-12:00, 2502B (Kansas City Convention Center)
The further we move into deep space exploration the more we have to ask, to what extent it can be risk-free, or at least risks limited. We consider the risks, what can be done to guard against them, and how much risk do humans need to accept — at least in the early stages.
H.G. Stratmann (M), Henry Spencer, Jerry Pournelle, Janet Freeman-Daily, Frank Wu

Space Technology Spinoffs
Saturday 8/20/2016 16:00-17:00, 2210 (Kansas City Convention Center)
There have been some 2,000 technological products, inventions and ideas trasferred from NASA missions to commercial products and services. Of these, many have made life on Earth better in the fields of health and medicine, transportation, public safety, consumer goods, energy and environment, information technology, and industrial productivity. Panelists discuss their favorite examples of space technology spinoffs.
Mrs. Laurel Anne Hill, Les Johnson, Janet Freeman-Daily (M), Joy Ward, Brenda Cooper

Cancer Treatment
Sunday 8/20/2016 10:00-11:00, 3501H (Kansas City Convention Center)
In the last year fandom has lost many good people to cancer – both fans and creators. Many members of our community are currently being treated or are in remission and more people get diagnosed everyday. Our experts have an informal discussion about how cancer is currently treated and what it will look like in the future.
Janet Freeman-Daily, Dr. Ronald Taylor

You can also visit my official schedule page on the MidAmeriCon II website.

My Upcoming Appearances: Westercon 69 (July 4 weekend)

Over the 4th of July weekend I will be attending Westercon 69 in Portland, Oregon, where I will speak on three panels and conduct one Kaffeeklatsch. I will also be participating in a lung cancer meetup in Portland on Monday July 4 at 10 AM–please post in the comments if you want to be part of it.

Here is my tentative schedule at Westercon:

How being an engaged patient can save your life (Hawthorne)
Friday Jul 1 5:00 pm – 6:00 pm
Patients around the world are changing the healthcare model by becoming partners in their own care. What is an engaged patient, how can you become engaged, and why should you care?
Ari Goldstein, Ellen Klowden, Frog Jones, Janet Freeman-Daily, Jennifer Willis

Recent Scientific Breakthroughs – What (Lincoln)
Saturday Jul 2 1:00 pm – 2:00 pm
Is it black holes, gravitational waves, global warming, a new species discovered, or something else? Which recent discoveries intrigue you most.
Dan Dubrick, Gregory Gadow, James Glass, Janet Freeman-Daily

Kaffeeklatsch (Multnomah)
Sun Jul 3 11:00 am – 12:00 pm
Small group discussions with authors, artists, and other interesting personalities (referred to as “hosts”) Sessions are limited to the host and a small group of attendees.
Ctein, Daniel H. Wilson, Janet Freeman-Daily, Jeff Sturgeon, Manny Frishberg, Sara Stamey, Sue Bolich

Is Gibson Getting Out of Hand? (Hawthorne)
Sun Jul 3 1:00 pm – 2:00 pm
Is corporate control of research and the drive for short-term profit crippling scientific innovation and basic research? Do established companies always feel threatened by new technology and lobby for legislation to restrict it?
Bob Brown, Frank Hayes, Janet Freeman-Daily, Jim Doty

My Next Speech: Bringing the Lung Cancer Patient to the Foreground at #ASCO16 CME

peerview grace asco logo

I’m excited to announce that I have been asked to speak on June 5, 2016, at a dinner symposium titled “NSCLC Forum: Bringing the Patient to the Foreground of Evidence-Based Lung Cancer Care.” It’s sponsored by PeerView Press (a medical education provider) and GRACE (a web resource for cancer patients).

This is an evening event concurrent with ASCO 2016 Annual Meeting in Chicago, usually called just ASCO. ASCO (short for American Society for Clinical Oncology) is the world’s biggest cancer conference—just you and 35,000 of your closest friends.  Attendees hear about results for cancer clinical trials along with prevention, diagnosis, survivorship, policy, advocacy, and oncology career info, and explore a huge exhibit hall.  Last year I clocked five miles a day just walking between sessions!

I’ll be talking about using social media to improve outcomes for lung cancer patients.  The meat of the program includes case studies presented by four research oncologists (including, coincidentally, my Denver oncologist Dr. Ross Camidge), and panel discussions. PeerView tells me this may be the first time a patient has been the lead speaker at an ASCO CME (Continuing Medical Education) program. I’m honored that the sponsors and my fellow speakers believe I’m up to the challenge.

At my request, PeerView modified their registration form so patients and caregivers/advocates can register for this event. If you’d like to see me speak, you can register (no charge) to attend in person (and have a free dinner starting at 6:30 PM Central) or watch the live stream online (starting at 7 PM Central).  The recording will be available later on the web (I’ll share the link when it’s posted).  Several other evening events (including the ASCO President’s Reception, alas) will be competing for the attention of ASCO attendees at the same time, so please attend and help fill the seats. Hope to see you there!

 

Edit 8-Jun-2016:

The unedited, uncut version of the 2-hour webinar in which I spoke at ASCO 2016 is available here. You must register, but it’s free. My talk begins at about 2:40, and runs about 10 minutes.

https://tallen.webcasts.com/starthere.jsp?ei=1104671

An edited version will be available soon.

Looking forward: 2016 AACR Annual Meeting and the Scientist-Survivor Program

Microscope

I recently learned I was selected to participate in the American Association of Cancer Research (AACR) 2016 Scientist-Survivor Program!  I’m excited to be attending the AACR Annual Meeting this April in New Orleans.  Thanks to the Bonnie J. Addario Lung Cancer Foundation for sponsoring my application.
I’m looking forward to networking with researchers as well as meeting advocates for other types of cancers to discuss their work.  I’ll also be presenting a research poster on Lung Cancer Social Media (#LCSM) on Twitter, which offer a unique opportunity to connect with all types of stakeholders in the lung cancer community — patients, caregivers, healthcare providers, researchers, hospitals, pharmaceutical companies, advocacy groups, and insurance payers.  Afterwards I plan to blog about the experience and share some of the exciting research presented at the meeting.
After the meeting, I’m going to have a few days vacation to enjoy New Orleans (which I’ve never visited).  I’ll then take The City of New Orleans Amtrak route to Chicago, followed by another train to Boston.  I’ll arrive just in time to present at another conference (GET 2016) at Harvard the next day! I had originally planned to take the Sunset Limited from New Orleans to LA, but after I was invited to GET my travel coordinator (e.g., hubby Gerry) could not find any place where I could disembark along the way and fly to Boston in time for the conference.  After GET, I’ll take a train to Washington DC, where I’ll be a speaker at LUNGevity’s National HOPE Summit.  Whew!
Glad I have willing housesitters who love (and are loved by) the cats.