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? 

About that conspiracy to hide the cure for cancer …

Reality check: No one is hiding THE ONE CURE for cancer.

There will not be one treatment to cure all cancers, because each case of cancer is as unique as the person whose cells mutated to create it.

We’ve been curing cancer in groups of mice and lab containers for decades. However, the human body–and therefore each cancer it generates–is more complicated than a mouse or cells isolated in a petri dish.

Each cancer is a unique living organism that can mutate and evolve over time. Just like its host, a cancer’s characteristics and behaviors are influenced by genetics, environment, nutrition (what it consumes to make energy), and exposure to infectious diseases and toxins (and probably other factors we haven’t discovered yet).

If anyone had run a study in humans that proved a single cure worked for every case of cancer, no one could hide it. No one could silence the millions of joyful, grateful patients who had been cured by it.

Enough with the cancer conspiracy theories, people.  Accept that humans–and cancer–are complicated creatures, and get on with the research.  We cancer patients are waiting, and we don’t have the luxury of time.

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)

Advocacy and the Science of Cancer Research: the AACR Scientist↔Survivor Program

The AACR Scientist↔Survivor Program lets cancer advocates network with scientists driving cancer research

This year I was among the cancer patient advocates who applied for and were selected to participate in the American Association for Cancer Research (AACR) Scientist↔Survivor Program (SSP) .  As part of the program, I attended the AACR 2016 Annual Meeting held April 16-20 in New Orleans, Louisiana.

The program consisted of an orientation day, including an excellent Cancer 101 briefing by Dr. Carolyn Compton; SSP-only sessions in which advocates met with top researchers to discuss specific topics such as immunotherapy and FDA policies; presenting an original poster during an AACR poster session; a group project in which a scientific advisor and an experienced SSP mentor helped us explore a major aspect of cancer research; evening networking events; and, of course, attending the Annual Meeting with cancer researchers.

Posters created by advocates talked about a variety of subjects–cancer journeys, advocacy organization outreach, even personal research projects. My poster discussed the benefits of the Lung Cancer Social Media (#LCSM) community on Twitter–thanks to my fellow #LCSM Chat Core Members for their valuable suggestions and feedback.

JFD with AACR poster

I didn’t understand every presentation in the actual AACR meeting — in at least one presentation I didn’t understand ANYTHING (gene editing is very technical) — but I did come away with a better understanding of the scope of cancer research, some of the issues impeding progress, and a list of topics I wanted to explore further.

I loved listening to researchers explain cutting edge work that … READ MORE

This article was first published 24-Jun-2016 on my Cure Today blog

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

New Survey Available for Patients with Any ROS1-Positive Cancer

You might already know that my cancer is ROS1-positive. This means my tumor cells test positive for a rearrangement of the ROS1 gene in my DNA.

Now we ROS1-positive patients can help researchers learn more about our cancer by taking a survey.  If you’re already sold, click on the link at the bottom of this page.  For more info, read on!

All human cells have the ROS1 gene, but in adult humans the ROS1 gene isn’t very active. However, sometimes the ROS1 gene fuses with another gene and becomes “rearranged.”  Cells that have certain ROS1 rearrangements become cancerous.  ROS1 cancer is rare – about 1% of non-small cell lung cancers – and is found in several types of cancer such as brain cancer (glioblastomas), angiosarcoma, and melanoma.  ROS1 cancer can be very aggressive, but many patients respond amazingly well to a drug called crizotinib, which is FDA approved for ROS1-positive lung cancer.  You can learn more about ROS1 cancer, some of the patients who have it, and available treatments and clinical trials on the ROS1 portal .

Over 100 patients who have ROS1-positive cancer of any type (regardless of where the cancer started) have joined a Facebook group called “ROS1 Positive (ROS1+) Cancer.” We hail from a dozen different countries. We discuss how to handle side effects of treatment, explore the treatments and clinical trials available to us, and post new research findings. And we share concerns about our futures, because … well, those of us with metastatic ROS1-positive cancer are not curable.

I’ve had no evidence of disease (meaning we can’t detect any cancer) on crizotinib since January 2013. I wish I could say I’m cancer free, but I can’t.  For most everyone who takes crizotinib, the cancer eventually develops resistance to the drug, and tumors start growing again.

We ROS1ers need researchers to learn more about our cancer, and find more effective treatments. Now we can do something to help.

PatientDrivenResearch_Final_April 13, 2016

The Bonnie J. Addario Lung Cancer Foundation has partnered with ROS1ers to inform more people about our disease and develop patient-driven research that will hopefully find more effective treatments for us.  Although the ALCF focuses on lung cancer, this effort is addressing ROS1-positive cancer regardless of where in the body the cancer began.

The first step is an online survey that aims to discover what we ROS1ers might have in common and hopefully identify some causes for this rare cancer (the majority of the patients are young, fit never smokers). To our knowledge, this is the first-ever research into the possible causes of a genomically-driven cancer across cancer types.

Please complete your survey ASAP! While the survey will remain open for a long time, the first round of data analysis will commence on July 15, 2016, with a goal of announcing preliminary findings at the World Conference on Lung Cancer in December 2016.

If you have ROS1-positive cancer, please complete this survey.
If someone you know has it, please encourage them to complete this survey.
CLICK HERE FOR ROS1 PATIENT SURVEY

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

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.