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Celebrating Cancer Hashtag Communities and a Moonshot

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This coming week, the online cancer hashtag communities will be celebrating. Why, you ask? We have two good reasons.

  1. The Cancer Moonshot Summit happens Wednesday, June 29, in DC and in satellite locations all over the US (see DC agenda at bottom of this post). While several of our members will be attending, we all have the opportunity to provide input to the Cancer Moonshot (deadline July 1).
  2. The 5th Anniversary of the beginning of Breast Cancer Social Media (#BCSM)—and the beginning of cancer hashtag communities on the web—happens July 4!

Our celebration will take the form of several coordinated chats open to everyone, regardless of cancer type.

Mon 6/27:
#BCSM Chat (use both #BCSM and #cancerchat hashtags) will host a cross-cancer chat at 9 PM Eastern Time about three of the Cancer Moonshot Working Group topics (check blog on #BCSM website for chat details):
–Expanding Clinical Trials
–Enhanced Data Sharing
–Precision Prevention and Early Detection
Ideas generated can be submitted online to the Cancer Moonshot.

Wed 6/29:
Cancer Moonshot events in DC and satellite locations (see agenda for DC Summit below)

Wed 6/29:
#Hcchat will conduct the official Moonshot chat (use both #Hcchat and #Moonshot hashtags) at noon Eastern Time on the topic “Will the Moonshot lead to the death of cancer?” This chat applies to all types of cancers. Special guest will be Vincent T. DeVita, Jr, MD, who was head of the NCI during Nixon’s Cancer Act and author of “The Death of Cancer.”

Thu 6/30:
#LCSM Chat (use both #LCSM and #cancerchat hashtags) will host a cross-cancer chat at 8 PM Eastern Time about the remaining four Cancer Moonshot Working Group topics (check blog on #LCSM Chat website for chat details):
–Cancer Immunology and Prevention
–Tumor Evolution and Progression
–Implementation Sciences
–Pediatric Cancer
Ideas generated can be submitted online to the Cancer Moonshot.

Thu 6/30:
Last day to submit Moonshot ideas at https://cancerresearchideas.cancer.gov/a/index

Sun 7/03:
#BTSM Chat (use both #BTSM and #cancerchat hashtags) will host a cross-cancer chat at 9 PM Eastern Time about our hopes and dreams for cancer research and treatment in the future.

Mon 7/04:
5th anniversary of #BCSM and cancer hashtag communities

Mon 7/04:
#BCSM anniversary celebration chat at 9 PM Eastern (use both #BCSM and #cancerchat hashtags)

The cancer hashtag communities hope you’ll join us for some (or ALL) of these special events and help us celebrate! To learn more about the cancer hashtag communities, visit http://www.symplur.com/healthcare-hashtags/ontology/cancer/

 AGENDA FOR THE CANCER MOONSHOT SUMMIT IN WASHINGTON, DC


Cancer Moonshot Summit Agenda 1 (CROPPED) Cancer Moonshot Summit Agenda 2 (CROPPED)

#LCSM Chat 5/5: Know Before You Go—Conference Prep 101

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convention

image by Microsoft Office

Lung cancer patients and advocates are increasingly joining healthcare, pharma, government agency and biotech industry representatives at cancer-related medical conferences such as the American Association for Cancer Research (AACR) Annual Meeting in April and the American Society for Clinical Oncology Annual Meeting in June.

Planning ahead for these meetings is essential for getting the most out of your time. The events, which can last several days, often have many sessions happening at the same time in different rooms. In addition to scheduling considerations, the terminology, graphics, and scientific concepts discussed in the sessions can be overwhelming even for seasoned attendees.

Because no one can possibly attend every conference, attendees share the conference experience by posting tweets while at the conference (called “live tweeting”) about significant happenings and new findings. Often, these conferences have specific hashtags–for instance, those attending the ASCO Annual Meeting this year will include #ASCO16 in their tweets. However, live tweeting from sessions presents some challenges, like condensing new concepts into less than 140 characters, and continuing to follow slides while composing tweets.

In our Thursday May 5 #LCSM Chat at 8 PM Eastern Daylight Time (5 PM Pacific), we will share ideas how attendees might prepare in advance to get the most from a medical conference and share their conference experience with others in real time on Twitter. Janet Freeman-Daily will moderate our discussion using the following questions:

  • T1: What tips do you have for getting the most out of a medical conference? How do you prepare?
  • T2: What concepts would be most helpful for patients/advocates to know before attending cancer conferences? Where can they learn these?
  • T3: What tips do you have for live tweeting a medical conference? What kind of live tweets do you value most?

We hope you’ll join #LCSM Chat on Thursday May 5 at 8 PM EDT. If you’re new to tweetchats, please read this primer on how to participate in #LCSM Chats.

Reblogged with permission from the LCSM Chat website.

Opportunity to honor Dr D Ross Camidge

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Camidge and daughters

Dr. D Ross Camidge, MD, PhD, at the University of Colorado (CU) Cancer Center has provided me and many other lung cancer patients and caregivers with hope, support, effective clinical trials, remote second opinions and excellent cancer care. On April 5, Dr. Camidge’s work will be honored as he formally accepts the newly-created Joyce Zeff Endowed Chair in Lung Cancer Research.
   
A patient speaker (not me) will be talking at the event about Dr. Camidge’s impact on patients. We have a unique opportunity to show Dr Camidge–as well as the donor Ms. Zeff and CU–how many people he has helped in lung cancer patient communities .
   
If you are willing to have your Camidge experiences and kudos shared from the stage at the recognition ceremony, please post them below. I’ll make sure they get to the patient who will be speaking. If you want your name (real or online) associated with the quote, please say so in your post.
   
Thanks in advance for your contributions!
   
Janet Freeman-Daily (AKA Squanch)

Crizotinib (Xalkori) approved for ROS1-positive NSCLC!

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The anticancer pill I take in my clinical trial, Xalkori (generic name crizotinib), was approved today by the FDA for my type of lung cancer: ROS1-positive non-small cell lung cancer.  I’m one of the 50 patients whose results were included in the clinical trial data.

In addition to being happy that I found an effective treatment for my lung cancer–I’ve had No Evidence of Disease for 36 months and counting–I feel proud to be part of the research that is making new cancer treatments available for more patients.

Precision medicine, targeted therapies, and clinical trials are awesome.

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Edit 2016-03-11 2 PM to add:

Some people have asked what this approval means to my participation in the clinical trial.

The short answer:
Nothing has changed for me. I’m still in the clinical trial, and I still get my drug free (but have to pay for my travel).

The long answer:

Last April, Xalkori for ROS1+ NSCLC received “breakthrough” FDA designation, which is one type of accelerated FDA approval. The accelerated approval process allows the FDA to grant approval before a Phase 3 clinical trial is completed, but still requires a Phase 3 trial to be completed eventually. So my clinical trial must continue until the Phase 3 trial is complete, or the FDA will pull its approval of Xalkori for ROS1 NSCLC.

Xalkori originally received breakthrough designation for ALK+ NSCLC, and was granted FDA approval through the accelerated process in August 2011 (the fastest drug approval to date). The Xalkori for ALK+ NSCLC phase 3 clinical trial still continues over four years later. So I suspect my clinical trial will be continuing for some time.

However, even if I left the clinical trial, Xalkori is already covered by most insurance plans, and today’s FDA approval means pretty much all plans will cover it. However, the copays vary considerably.  Some plans cover it as a pharmacy benefit with a substantial out of pocket expense.  Others cover it as a medical expense, with a standard deductible.  I haven’t checked to see how (or if) my plan covers it.

I plan to stay in the clinical trial at the University of Colorado for the forseeable future.  I like having regular access to some of the top experts in the world on ROS1 cancer and molecular testing for precision medicine.  My writing income goes to fund their Lung Cancer Colorado Fund for lung cancer research.  I also participate in their research as a patient advocate on the NCI-sponsored CU lung cancer SPORE (Specialized Program for Research Excellence) and get to learn about cutting-edge cancer research, which satisfies the geek in me. Besides, I’ve grown fond of several people I’ve come to know at CU.  It’s become a second home of sorts.

So, yeah, this approval does not change my treatment. But hopefully it will make the treatment more available to more patients ASAP.

Patient Advocate Scholarships Available to Attend #ASCO16

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Photo shows two mean chatting in the bustle of Annual Meeting.

If you are a cancer patient advocate interested in attending ASCO 2016, consider applying for the Conquer Cancer Foundation Patient Advocate Scholarship Program.

I have attended ASCO’s annual meeting in Chicago for the past two years.  While the five-day conference can be exhausting, it’s perhaps the best way to learn what treatments are up and coming for your type of cancer, become educated about the science behind research and clinical trials, and discover (and even chat with) the experts in your type of cancer.  It’s also a place to meet the people in your cancer community who you might only know online.

The ASCO (American Society of Clinical Oncology) 2016 Annual Meeting–held in Chicago June 3-7–will bring together over 30,000 cancer professionals from around the world for sessions about state-of-the-art treatment, results of clinical trials, as well as policy, advocacy, and survivorship issues.  You might strike up a conversation with a world-class expert in your type of cancer at a poster presentation or even walking between sessions.  The exhibit hall is a great place to learn about new biotech technologies (such as genomic testing panels and liquid biopsies) as well as what’s in each pharmaceutical company’s drug pipeline.

The Patient Advocate Scholarships are intended for expenses related to air or train travel, lodging, and meeting registration for advocates traveling from outside the Chicago area to attend the meeting (which can add up to $2K US or more).  Eligibility is based primarily on financial need as well as advocacy experience and current activities. Applicants will need to demonstrate why they would not be able to afford to attend the ASCO Annual Meeting without a scholarship award, and are encouraged to provide a compelling reason why their attendance at the meeting is vital to their advocacy role(s).

Although the application period for the doesn’t open until April 4, get an early start now on preparing your application –the application period will only open for three days!

Take It Personally: How decoding your genes might unlock the future of health care

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Denver’s “5280” magazine just published a terrific article on precision medicine called  Take It Personally: How decoding your genes might unlock the future of health care by Julie Dugdale (click on the link to read it). It’s a top-level summary of the benefits and issues that arise from using genomic data in medicine.  One of the main players in the article is the University of Colorado School of Medicine, and some of the providers I work with at CU are quoted (Dr. Dara Aisner and Dr. Robert Doebele).

P.S.  I play a bit role in the article (as a lung cancer case study)

 

 

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

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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.

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NEW SCAN RESULTS + CLINICAL TRIAL DECISION

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.

Love,

Dann

Come Hear me at the GRACE Acquired Resistance Forum for ALK, ROS1 and EGFR Lung Cancer 10/03/2015

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GRACE ALK EGFR ROS1 forum graphic

I hope you’ll join me and a host of lung cancer experts on Saturday, October 3, 2015 at the GRACE ALK, ROS1 & EGFR Acquired Resistance in Lung Cancer Patient Forum. I’m on the faculty, speaking about lung cancer patient survivorship.

The forum is for ALK, ROS1 & EGFR lung cancer patients and their caregivers, and will be held at the Marriott Waterfront San Francisco. You can register and read the agenda (with a list of confirmed faculty) online.

At the forum, lung cancer patients can learn about research advances in lung cancers driven by ALK, ROS1, and EGFR. You’ll hear from leaders in targeted therapy research. In addition to presentations and question and answer sessions, attendees will have many opportunities to approach the faculty to speak with them directly. An evening reception after the event will enable additional face time and give attendees – many of whom know each other from online support groups – a chance to meet in real life.

Scheduled presentations include:

  • Acquired Resistance & Why It Occurs
  • Brain as a Sanctuary Site
  • Repeat Biopsies and Serum-Based Testing
  • Selecting Patients for Immunotherapy
  • Quality of Life vs Progression Free Survival – What Are the Most Relevant Endpoints?
  • Patient Assistance Programs
  • Lung Cancer Survivorship

Additionally, breakouts for ALK/ROS1 patients and EGFR patients will cover issues specific to those patients:

  • New Ideas and Treatment Options
  • Individual Treatments for Individual Mutations
  • Combinations to Prevent & Treat Acquired Resistance
  • Drug Sequencing

Registration is $25 per person. GRACE has negotiated a group rate for rooms at the Marriott Waterfront San Francisco of $179 per night (request the “GRACE Patient Forum” room rate).

Hope to see you there!

Brain fog: the subtle side of scanxiety

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Image credit: Microsoft

Image credit: Microsoft

Tomorrow morning I fly out for another Monday PET-CT scan at University of Colorado (CU) in Denver. Tuesday I start cycle 35 of Xalkori on my clinical trial (cycle = 4 weeks). If my Tuesday clinic visit reports a clean scan, I’ll be almost 30 months NED on this targeted therapy.

Because my injured left shoulder is so inflamed, I asked my oncologist if I should have a CT instead of the usual PET-CT this time (inflammation shows up hot on a PET scan), but he says he will just ignore that shoulder. Since I had a detailed MRI of that area a couple of weeks ago when diagnosing my shoulder problem, I’m not concerned a metatasis might be missed. I do wonder how my shoulder will feel after having my arms over my head in the scanner for over 20 minutes, but that’s not a big concern either.

While at University of Colorado, I’ll also be meeting with a CU communications staffer (to discuss cancer center public relations), a molecular pathologist (to discuss ways to explain benefits of genomic testing), and Lung Cancer SPORE members (to discuss a SPORE project). I’m really enjoying my work and friendships with all of them, and love getting to learn about cutting edge science from those who are doing the research. Alas, Dr. Camidge is away on travel, so I won’t get to work on any videos with him this trip.

Interesting projects are definitely worthwhile distractions at scan time. I’ve been so busy with lung cancer advocacy and travel (26 days out of the last two months) that I haven’t had time to feel any conscious scanxiety. However, I still haven’t packed, completed household pre-trip tasks, or written items with impending deadlines, and I’m moving slower than usual. I find myself having difficulty thinking beyond my next cup of coffee. It’s sunny and clear outside, but gray and fuzzy inside my head. So maybe I’m not yet entirely immune to scanxiety’s influence.

Then again, the brain fog could simply be lack of sleep due to Seasonal Affective Disorder (the sun is up 16 hours of the day right now in Seattle), time zone tango, and travel schedules. The source of the fog doesn’t really matter, I suppose, as long as I warn my family of its presence. Otherwise they may wonder why the dirty dishes are in the microwave instead of the dishwasher.

What’s the best part of National Cancer Survivors Day?

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To celebrate National Cancer Survivors Day, I’m sharing a recent picture of me with Linnea Olson, a sister metastatic lung cancer patient and one of the bloggers (Outliving Lung Cancer) who inspired me to become a lung cancer blogger and advocate.  She and I are both alive thanks to research and clinical trials.  As Linnea phrased it on Twitter, … read more