Sunday, June 26, 2016

Celebrating Cancer Hashtag Communities and a Moonshot

The #gyncsm community is pleased to be joining in the activities celebrating our cancer hashtag communities and the Moonshot Program. Many representatives of our hashtag communities have been invited to the Moonshot Summit in Washington, DC or one of the Regional Satellite Summits. We invite everyone in the gynecologic cancer community to join with survivors, advocates, researchers and others for one of the chats listed or to submit an idea to the Moonshot Program (link provided below). 

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 on Twitter (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)

















Original blog post appeared on lcsmchat.org site. 


Dee and Christina
Co-founder's #gyncsm Chat (est. 2013)

Wednesday, June 8, 2016

June 8, 2016: What's New in Gyn Cancer Research

Thirty-four #gyncsm community members chatted about What's New in Gyn Cancer Research.  Our discussion focused on research presented at the Society of Gynecologic Oncology Annual Meeting (#SGOmtg) held March 19-22 in San Diego, the American Association for Cancer Research Annual Meeting (#AACR16) held April 16-20 in New Orleans, and the American Society of Clinical Oncology Annual Meeting (#ASCO16) held June 3-7 in Chicago.

You may find the transcript here and the chat analytics here

We began our chat by remembering our friend and supporter of #gyncsm, Jody Schoger, #bcsm co-founder. She was an amazing advocate. 

Topic Questions / Sample Response Tweets: 

T1:Do you research new treatments and studies online? Do you follow scientific meetings like #SGOmtg, #AACR16 and #ASCO16? 

  • I participate in twitter to inform patients and families of key findings from meetings using #SGOMtg #ASCO16 #AACR16
  • A caution in keeping up with research is how long it can take for studies to lead to any change in practice guidelines
  • Plus I want to be prepared with what options I will have if I recur again
  • I find @ASCOPost emails useful.

T2:GOG 252 did not support a previous study which showed IP chemo benefit (tough treatment for many). How does this change things? 
  • #ASCO16 session on GOG252 Walker: Median PFS all three arms GOG252 similar
  • There is still a benefit for IP chemo - demonstrated in 3 large randomized trials We need to understand who benefits most
  • Yes, Dr Gourley mentioned 3 Pos studies(GOG 104,114,172), 1 neg(252)
  • I feel more confident telling patients that if they want the benefits of GOG172, we have to at least try the same regimen 
  • #ASCO16 session on GOG252 Mackay-“unresolved issues” 
T3:In the hot topics of immunotherapy, precision medicine, and genetics, which #SGOmtg/ #AACR16/ #ASCO16 research excited you? 
  • https://t.co/DfjMW5ZPwP adv endometrial cancer : everolimus, letrozole,metformin showed clinical benefit in ph 2study 
  • I'm very excited about the interest & research on hereditary cancers and how to use this to guide targeted therapy-new options! 
  • Pembrolizumab:well tolerated, showed antitumor activity pts w/ PD-L1+ adv cervical squamous cell cancer.https://t.co/P5KsDdtTUA
  • Precision medicine for Gyn disease is finally taking root. It not only bevucizumab anymore
  • Kurian: Genes mutations in #ovca article https://t.co/O1mgn5zqoc
  •  Liquid biopsies (look for circulating tumor DNA in blood) https://t.co/PUROem0e7N 4 screening and during treatment talked about 
  • There was a clear theme of trying to find out who are the responders to a given Rx - understanding the pts that benefit the most
T4: What studies reported at #ASCO16 in palliative care, survivorship, and psychosocial research could help gyn cancer survivors? 
  • The data on early involvement of palliative care should be able to be extrapolated to gyn cancer patients and caregivers
  • QOL may predict survival in recurrent #ovca @ASCOpost -https://t.co/te0NvFAkPJ 
  • Real studies on improving chemo induced. Neuropathy with PT
  • Qol: older long term #ovca survivors better QOL than younger https://t.co/OGKtr3t0oi
  • It was great to see presentations beyond standard chemo treatment. ASCO. It's not just about chemo
T5: As "patient-centered" research becomes more accepted, what do you see as the role of the patient in future cancer research?
  • Been great to see White House precision medicine efforts. workshop this week: Engaging participants as partners in research
  • Let's start with adding quality of life components to all studies.
  • Being more patient-centered means looking beyond overall survival endpoints. Also need patients in design of studies to reach.
  • This from #SGOmtg patient-centered research: Accepting treatment w/ Side Effects change as Goals Change https://t.co/xhY9Wg1FRn
  • Patients see so much in the practical side of clinical trials that trial designers don't think about.
  • I would love to see advocates on irb. And involved in trial design

Our next #gyncsm chat is on  Wednesday  July13th  at 9pmET when we will discuss Spirituality and Quality of Life with guest @MeredithGould of #hlthsp. We hope you can join us. 

Remember patients and caregivers are invited to continue our discussion on the Smart Patients platform at https://t.co/dFCf1Mcahw

See you next month!

Dee Sparacio
Co-founder #gyncsm Community and Chat

Resources:
@SGO_org Society of Gynecologic Oncology: #SGOmtg Abstracts and Late-breaking Abstracts https://t.co/vjzYlqOTC1

@AACR American Association for Cancer Research: #AACR16 Abstracts https://t.co/2sZ6G7QveL

@ASCO American Society of Clinical Oncology: #ASCO16 abstracts https://t.co/3vruaogIUV

"Roundup of #OvarianCancer Abstracts From #SGOmtg on Women’s Cancer" https://t.co/7z5UlcDx17 via @ascopost

@ocrfa statement on GOG 252 https://t.co/XTjyzfOpw9

key abstracts at #ASCO16 Gyn Onc at ASCO 2016: Ovarian Cancer https://t.co/t1krzp6ymx via @YouTube

Abstracts #ASCO16 Gyn Onc at ASCO 2016: Cervical Cancer https://t.co/780LCAOh72 via @YouTube

abstract review from #ASCO16 - Gyn Onc at ASCO 2016: Endometrial Cancer https://t.co/Dsh7AdyArv via @YouTube

exercise and neuropathy: https://t.co/LZwUSbWVAi

Engaging participants as partners in research - Workshop Storify https://t.co/RrRVpndnQd via @stanfordmedx

researchers going directly to metastatic breast cancer patients. https://t.co/iV2dnxfzIY?


Friday, June 3, 2016

What's New in Gyn Cancer Research - June 8th #gyncsm Chat




Join us on June 8, 2016 at 9pm ET (8pm CT/6pm PT) as the #gyncsm community discusses What's New in Gyn Cancer Research. 

Our chat will focus on research presented at the Society of Gynecologic Oncology Annual Meeting (#SGOmtg) held March 19-22 in San Diego, the American Association for Cancer Research Annual Meeting (#AACR16) held April 16-20 in New Orleans, and the American Society of Clinical Oncology Annual Meeting (#ASCO16) held June 3-7 in Chicago.

We hope you will join us as we answer these questions:

T1: Do you research new treatments and studies online? Do you follow scientific meetings like #SGOmtg, #AACR16 and #ASCO16? 

T2: GOG 252 did not support a previous study which showed IP chemo benefit (tough treatment for many). How does this change things? 

T3: In the hot topics of immunotherapy, precision medicine, and genetics, which #SGOmtg/ #AACR16/ #ASCO16 research excited you? 

T4: What studies reported at #ASCO16 in palliative care, survivorship, and psychosocial research could help gyn cancer survivors? 

T5: As "patient-centered" research becomes more accepted, what do you see as the role of the patient in future cancer research?

You can search abstracts and sessions from each meeting on these corresponding pages:

#SGOmtg Abstracts & Late-breaking Abstracts
 https://www.sgo.org/2016-annual-meeting-archives/

#AACR16 Abstracts
 http://www.abstractsonline.com/plan/start.aspx

#ASCO16 Abstracts
 http://abstracts.asco.org/176/CatView_176_B.html


Do you have a research topic you are interested in learning more about? Let us know by commenting below.

See you on the 8th.

Dee
Co-founder #gyncsm