#CureChat 1/12: A conversation about precision medicine and clinical trials

curechat-graphic

I am honored that I was asked to be the featured guest for the #CureChat on Twitter this Thursday, January 12th, 2017 at 1 pm ET.  We’ll be talking about precision medicine and clinical trials.  You can read more about it on the Cure Forward blog.  Hope you can join us!

Chat Topics (from the Cure Forward blog):

T1. Janet Freeman-Daily’s Story (my lung cancer story, told 140 characters at a time)

T2. What does the term “precision medicine” mean to you and how does it connect to clinical trials?

T3. Tell us about the ROS1 Mutation.

T4. What were your biggest fears and misconceptions about clinical trials before finding out about them via an online community?

T5. How did it feel to be accepted into a trial? What emotions, and why? And how did you manage them?

T6. What are some of the positive aspects of clinical trials that most people don’t know about?

T7. Please share some online resources where you find trustworthy info for lung cancer and clinical trials.

You can follow the conversation in Twitter by entering “#CureChat” in the search box to filter tweets.  However, if you haven’t joined a tweetchat before, you may find the conversation easier to follow if you use a tool designed for tweetchats, such as tchat.io.  To use tchat.io, do the following:

  • Login to Twitter (you must have a Twitter account to do this)
  • Type “tchat.io” in the URL of your browser, then hit the “enter” key. The tchat.io entry page will appear.
  • Type “#CureChat” in the box that says “enter hashtag,” then left-click on the colored box that says “Start Chatting.” You will be taken to a page that has a big blank textbox at the top, and a list of recent tweets that contain the hashtag “#CureChat” below.
  • Left-click on the link just below the textbox that says “sign in.” A popup window will ask if you want to authorize tchat.io to access to your Twitter account. Left-click on the box that says “authorize app.” You will return to the tchat.io page.
  • Left-click on the link above the textbox that says “hide retweets.” This will eliminate duplicate tweets and make the conversation easier to follow.

Now you can follow the #CureChat conversation on the tchat.io page.  If you want to contribute to the conversation, type your own tweets into the textbox at the top of the page.  Tchat.io will automatically add the hashtag #CureChat to the end of your tweet so your tweet will appear in the conversation.

However you choose to follow the chat, if you want to respond or direct a question to someone in the chat, be sure to include their Twitter handle (e.g., @JFreemanDaily is my handle) at the beginning of your tweet.

Thanks to Liza Bernstein (@itsthebunk) and the Cure Forward team for inviting me to be their guest in this chat.  I look forward to seeing you on Thursday!  I will post the link to the Storify summary of the chat HERE once the Cure Forward team posts it.

 

Who are Cancer Clinical Trials For? (a reblog)

Cancer clinical trials can be a good treatment option.  Today I’m giving a signal boost to a great post on CURE Today by my amazing clinical trial oncologist, D. Ross Camidge, MD, PhD, at University of Colorado.  He’s written a nice overview of the benefits and pitfalls of cancer clinical trials for patients.

Who are Cancer Clinical Trials For: Guinea Pigs, Test Pilots or Prize Poodles? 

Precision medicine treatment update for advanced NSCLC (Dec 2016)

If you have been diagnosed with advanced non-small cell lung cancer (NSCLC), please read this blog post.  It could buy you months or years of good living.  Lung cancer treatments are advancing so fast that your cancer doctor may not know this information–even if they are at a major academic cancer center.

Scientific evidence is accumulating that genomic testing and targeted therapies for cancer patients who have advanced non-small cell lung cancer make a significant difference in outcomes.  By “significant difference,” I mean a year or more of survival with good quality of life.  Genomic testing and a targeted therapy have given me no evidence of disease for four years despite my metastatic lung cancer.  Now THAT’s is a significant difference!

Genomic testing looks at the cancer cells DNA for alterations in certain genes that may be driving the cell to act like cancer.  FDA-approved drugs are available that can target some of these driver genes (EGFR, ALK, and ROS1) and inhibit the cancer–these drugs are called “targeted therapy.”  Targeted therapy for other driver genes are available through clinical trials.  These drugs do not cure, but they are usually more effective and more tolerable than chemo.  Not every NSCLC cancer will have a driver gene, and not every driver gene has an effective treatment.  However, it’s worth investigating, because about 60% of NSCLC adenocarcinoma patients likely DO have a driver gene that can be targeted with an approved or experimental drug (per the LCMC II study).

Guidelines from the College of American Pathologists (CAP), the International Association for the Study of Lung Cancer (IASLC), and the Association of Molecular Pathologists (AMP) recommend analyzing either the primary NSCLC cancer tumor or a metastatic tumor for EGFR and ALK, regardless of patient characteristics (such as age, race, or smoking history). The National Comprehensive Cancer Network guidelines for metastatic non-small cell lung cancer strongly recommend testing for alterations in EGFR, ALK, and ROS1 genes, as well a broader genomic panel to look for driver genes that might have clinical trials available.

A recent article is a great reference on this subject for both physicians and for patients who want to learn more about their options.  It discusses evidence-based molecular testing options, driver genes, and available targeted therapy options, including off-label use of FDA-approved drugs for patients whose cancer mutation does not yet have an approved treatment. It also provides references to professional society guidelines and key journal articles.  The authors are Lecia V Sequist, MD, MPH (Associate Professor of Medicine, Harvard Medical School–an EGFR superdocs and a member of LUNGevity’s Scientific Advisory Board) and Joel W Neal, MD, PhD (Assistant Professor of Medicine–Oncology, Stanford University/ Stanford Cancer Institute).

Those of you with advanced NSCLC might want to share the article with your cancer doctor.

Personalized, genotype-directed therapy for advanced non-small cell lung cancer by Lecia V Sequist, MD, MPH, and Joel W Neal, MD, PhD

Research and new treatments are moving faster than most cancer physicians can track.  Patients with advanced NSCLC can increase their chances of survival if they learn more about their disease.  I hope this blog helps you do that.

Involving ROS1-Positive Cancer Patients in ROS1 Research

Hey ROS1ers: This is an IMPORTANT REQUEST!

We all want to find a CURE for our disease, right?

To do this, we need to know how many patients are willing and able to participate in research for cancer driven by ROS1 mutations. The results will hopefully motivate more patients to join us, generate more interest in collaborative ROS1 research, and attract more funding to ROS1 research.

PLEASE COMPLETE THIS BRIEF 10-QUESTION POLL AS SOON AS POSSIBLE. Just click on the link below to get started! It only takes about 5 minutes. Results of the poll will be posted on the ROS1cancer website, and the Bonnie J. Addario Lung Cancer Foundation (ALCF) ROS1 website.

SurveyMonkey Poll: Patient Interest in ROS1 Cancer Research

patients-banding-together-for-research

AND …

If you haven’t already, please complete the ROS1 patient survey on the ALCF ROS1 website. We need more responses–COMPLETE responses (all questions answered)–to have statistically valid data. It’s a long survey (might require an hour), but the length is necessary to accomplish its goals. The survey examines ROS1 patients’ diagnosis and treatment journey, family cancer history, patient exposure to toxic environments and materials, and other factors that might have contributed to the development of ROS1 cancer. A poster about the survey was presented at the IASLC Chicago Multidisciplinary Symposium In Thoracic Oncology in September 2016. The preliminary results of the survey will be presented at the IASLC World Conference on Lung Cancer in Vienna in early December 2016.

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!

Register for the GRACE 2016 Targeted Therapies in Lung Cancer Patient Forum

GRACE EGFR ALK ROS1 Acquired Resistance Forum Faculty 2016-08-20

If you’re a patient or caregiver dealing with EGFR-, ALK-, or ROS1-positive lung cancer, please consider attending the GRACE forum in Denver this August. You’ll learn tons about the latest treatment options and trials, diagnostic tests, and tips for living with cancer as a chronic illness from experts like Dr Ross Camidge (my research oncologist at University of Colorado who started their remote consult program) and Dr Dara Aisner (co-director of CU’s molecular pathology lab that does the tissue testing). Patients Linnea Olson , Tori Tomalia, and Bob Fuerst are on the program, too! If I didn’t have vacation plans with my son, I’d be there for sure.

You can register here: http://cancergrace.org/targeted-therapies-in-lung-cancer-patient-forum-2016-denver-co

Celebrating Cancer Hashtag Communities and a Moonshot

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)