Wednesday, December 11, 2013

Open Mic Chat : December 11, 2013


Thank you to our moderators, survivors, caregivers, health care providers and "lurkers" who participated in our Open Mic chat. We covered a number of interesting topics including support groups, fertility discussions, when to see your PCP vs your oncologist, survivorship, etc. Here is a link to the transcript from tonight's  #gyncsm chat.

Next month's chat topic ( 1/8/14 at 9pm EST) is cervical cancer.

Resources shared during the chat:

Pancreatic Cancer Action Network –Vision of progress

Woman to Woman

Stupid Cancer

Bright Pink

Sharsheret

Cancer Schmancer

Ovarian Cancer Discovery Deepens Knowledge of Survival Outcomes

Ovarian Cancer Survivor Jill Pall Continues Fundraising Efforts to Help Kicking For The Dream Fight Ovarian Cancer


Tweet handles shared  



We at #gyncsm wish you all a Happy and Health Holiday. 

Dee
Co-moderator


Thursday, November 14, 2013

Clinical Trial Chat Nov 13, 2013


Thank you to all the physicians, organizations, advocates and survivors who joined us last night for our chat about clinical trials. Here is a link to the chat.

Resource Links from our 11/13 chat: 

Previvors and Survivors
http://previvorsandsurvivors.com/

NCI's Learn About Clinical Studies page
http://clinicaltrials.gov/ct2/info/understand

NIH's Explore Clinical Trials page
http://www.nhlbi.nih.gov/health/health-topics/topics/clinicaltrials/

ACS Cancer Prevention Study-3 (CPS-3) http://www.cancer.org/research/researchtopreventcancer/participate-cancer-prevention-3

Lifestyle Intervention for oVarian cancer Enhanced Survival - LIvES study ‐ GOG 0225 http://www.ovarianlives.org/

NIH's ClinicalTrials.gov (search for open trials) http://clinicaltrials.gov/

Emerging Med Clinical Trial Matching Service - ovarian cancer form at http://www.emergingmed.com/networks/ocna/ or http://www.emergingmed.com/networks/ocrf/

Review of Clinical Trial Recruitment Apps
http://visual.ly/phases-clinical-trials

OCTANE Ovarian Cancer Trial Awareness Network & Empowerment http://www.ovariancancertrials.org/

Mercy Flight http://www.mercyflightcentral.org/

The Truly Staggering Cost Of Inventing New Drugs [ Forbes Article ] http://www.forbes.com/sites/matthewherper/2012/02/10/the-truly-staggering-cost-of-inventing-new-drugs/

Is a Clinical Trial Right for Me? [ Article & INFOGRAPHIC ] http://www.partnersinresearch.org/clinical-trial-me/

Breast Cancer Trials https://www.breastcancertrials.org/bct_nation/home.seam

Trial Matching & Information Service http://www.curelauncher.com



Dee
Co-moderator



Tuesday, November 5, 2013

November Topic- Clinical Trials

Our next #gyncsm chat will be held on Wednesday November 13, 2013 at 9pm EST. The topic of the night will be clinical trials.

Do you have questions about clinical trials?
How to find a clinical trial that is right for you?
Do you wonder why it takes so long for a drug to go from clinical trial to patient use?
Have you taken part in a clinical trial and want to share your experience with others.

If you answered yes to any of these questions then be sure to join us on the 13th.

Dee
co-moderator

Wednesday, October 9, 2013

Oct 9,2013 Genetics and Personalized Medicine

Thank you to our moderators and the survivors, caregivers , health care providers and the "lurkers"  who participated in our October chat. Here is a link to the transcript from tonight's  #gyncsm chat.



DAS

Wednesday, September 11, 2013

Ovarian Cancer Awareness Sept 11,2013 Chat

Thank you to all the physicians, survivors, caregivers and advocates who joined us this evening for a very lively and informative inaugural chat.

If you were unable to be a part of our first #gyncsm chat  you can read a transcript here.

Below are links shared during our chat.




Next Chat: Wednesday October 9, 2013 at 9pm EST
Topics: Genetics and Personalized Medicine


DAS


Friday, September 6, 2013

Etiquette Tips

updated 9/16/13

We are looking forward to having you join our Gynecologic Cancer Social Media chat next Wednesday Sept 11th at 9pm EST.

For those new to twitter and chats please remember you may just lurk. When you are ready and feel comfortable you will find that you will be commenting and asking questions like a pro.

Before we get started I would like to share some tips on how to make our time together a supportive, positive experience for all.

Etiquette Tips

Be Respectful: We all know that dealing with gynecologic cancer is not easy and our experiences will vary. Please be respectful of the opinions and experiences of other participants. Do not use profanity. Do not type in all caps. Verbal attacks on individuals or organizations with opposing viewpoints will not be tolerated.

Keep Some Information to Yourself: Please avoid using the names of your doctors or family members during the discussion. Feel free to use : DH = Dear (or Darling) Husband, DW = Dear Wife, DS = Dear Son DD = Dear Daughter, MIL = Mother-in-Law, FIL = Father-in-Law, SO = Significant Other, P = Partner.  Or for health care providers you may use PCP = Personal care physician ONC =  oncologist, GYNO = gynecologic Oncologist , RO=Radiation Oncologist, N =  Nurse , NP = Nurse Practitioner. If you wonder where another person was treated or who their doctor was please tweet to them without the #gyncsm hashtag or direct message them.

Don’t toot your own horn: Please do not self-promote during the hour chat. Feel free to share your book, event, project, fundraiser etc at the conclusion of the chat.

Keep on Topic: Please try to stay on topic. Side conversations are distracting and make a crowded discussion difficult to follow.

Give Credit: If you are sharing another person’s idea give them credit and share their Twitter name. And it is perfectly ok to compliment someone for an idea. But please try to keep the RT’s to a minimum to keep the conversation moving along.

Find Your Place: If you join us a bit late that is ok. Just jump right into the conversation on the topic we are currently discussing. No need to go back to the first discussion topic. This might cause some confusion to others.

Privacy or Lack there of:  Remember that what you write on Twitter is public. So anyone including all your followers will see what you are posting to the chat. Please read our Tweet Disclaimer for more complete information.

We know that there may not be enough time to get to every question or comment that may be raised but we hope that you will find value in the insight and comments of others. Remember you may reach out to us at gyncsm@gmail.com.

We are looking forward to spending time with all of you. 

See you Wednesday night!


DAS

Monday, September 2, 2013

Let's Chat

This is the second in a two part series called A Guide to Twitter and Tweetchat Part I  It was originally posted on the blog Women of Teal was posted August 26, 2013. 
Updated 9/16/13

Hopefully you have spent some time on Twitter and are feeling a bit more comfortable sending, reTweeting and favoriting Tweets. Now let’s get ready to take part in a chat.

What is a Tweetchat?
A Tweetchat is a virtual gathering of people discussing a particular subject. Using a hashtag helps identify the tweets that belong to the discussion. We will use #gyncsm in each chat. The conversation happens in real time and can take place at a fast pace. As with any tweet the character limit is 140 characters.

The first time I joined the #BCSM (breast cancer social media) chat, I searched for #bscm on twitter and followed along. I wrote some tweets but I forgot to use the hashtag twice and had to type in the tweets again with #bcsm . It was a bit of a challenge remembering and following along with the questions and comments.

So I researched Tweetchats and found that there were sites that were set up to make it easier to follow along and join in during a chat. The sites automatically add the hashtag to each tweet you write. I use Tweetchat (http://tweetchat.com/).


All you  have to do is go to the site, sign in with your Twitter account  and enter #gyncsm in the “Hashtag to follow” box. When the page opens you will see a box at the top of the page where you enter your tweet. Below that you will see all the tweets in the chat room. You can set the rate at which the chat window refreshes, the character size on the page and reTweet and reply all from one page.  

Others use Tchat.io ( http://www.tchat.io/) which has a layout similar to Tweetchat, Hootesuite (https://hootsuite.com/signup?planId=1 ) or Tweetdeck. (http://tweetdeck.com/). Feel free to check them out. I recommend that if you use those other sites you don’t wait till the night of the chat to sign up for the site otherwise you might miss some of the chat.

So what happens on chat night?
The #gyncsm will take place on the second Wednesday of the month at 9pm EST. Our first chat will occur on September 11, 2013.


A few minutes before the 9pm EST start sign in to Tweetchat or the site you prefer. You will see that some of us have already tweeted using the hashtag to remind our followers to join us.


Our #gyncsm Chat Format
Introductions  (9:00-9:10 pm EST)
All moderators will introduce themselves. We will then ask those who feel comfortable doing so to introduce themselves. Don’t worry if you feel like just “eavesdropping” on the conversation that is ok. You can always tweet us (@gyncsm) or e-mail us (gyncsm@gmail.com) with questions/comments after the chat is over.

Questions/ Discussion (9:11- 9:49pm EST)
Each chat will have a specific discussion topic.  The moderators will be prepared to share links that relate to our night’s topic. The discussion will revolve around 3 questions or comments regarding the night’s topic.  As we post each topic /question everyone is invited to comment. We ask that you be sure to use T1,T2 &  T3 in your reply so that we know which Topic you are responding to. 

In the future we may have special guests (authors, researchers or social workers) join us for a chat so the format may be modified for those occasions. We have put together a list of topics for discussion but feel free to let us know what topics you would like to talk about by sending a tweet (@gyncsm) or 
e-mail us (gyncsm@gmail.com).

We will have physicians and other medical professionals join us as moderators during the chats.  Please  refrain from asking them questions about your own personal health issues.  Rather jot those questions down and call or speak to your doctor at your next visit. 

Summary /Closing Remarks (9:50- 10:00pm)
During this time we will review the discussion and ask you to share what you learned by using "TIL"- Today I learned in the tweet. We will also remind you of the date / time and topic of our next chat. 

Chat Tips
Here are some things to keep in mind if you are new to chats:

·      As with all tweets, you are only allowed 140 characters per tweet.
·      I realize that the pace may be quick at times with participants commenting but please don’t be discouraged. You can scroll back in the conversation to catch up.  We hope to make a transcript of the chat available.
·      Please try to stay on topic. Side conversations are distracting and will make a crowded discussion more difficult to follow.
·      Try to keep retweets to a minimum so that the discussion can flow smoothly. 
·      The chat is not the place to promote your project / book / event/ fundraiser. We know you are all doing wonderful things please feel free to share with all after the chat is completed.
·      Be mindful that although we may all be dealing with a gynecologic cancer the experiences we have may not be  the same.  Please do not criticize another’s treatment decision.

We hope you will let us know what we can do to make this a supportive, welcoming and informative chat.  

A special thank you to the ladies of #bcsm for being a model of  how a successful chat is run.

DAS




Friday, August 30, 2013

Welcome to our Community

Welcome to the #gyncsm Community blog. This Community is for those impacted by gynecologic cancers.  Women diagnosed with gynecologic cancers (cervical, ovarian, uterine, primary peritoneal, endometrial, fallopian tube, GTD, vaginal, vulvar) their families, caregivers and health care providers  are invited to join us. We are an online presence at #gyncsm and tweet as @gyncsm.

Please join us for our regular monthly tweetchat on the second Wednesday of the Month at 9pm EST. The first chat will be on September 11, 2013. Our topic will be the treatment of gynecologic cancers by gynecologic specialists and ovarian cancer symptoms and awareness.

The community and chat is moderated by Dee Sparacio, an ovarian cancer survivor (@womenofteal)  and Christina Lizaso, a passionate gynecologic cancer advocate (btrfly12). We will be joined by our health care moderators Dr Rick Boulay (@journeycancer), Dr Don S Dizon (@drdonsdizon) and Dr MJ Markham (@DrMarkham).

We welcome your comments and suggestions for future chats. You may e-mail us at gyncsm@gmail.com

DAS