Cervical Cancer Chat - January 8, 2014

Happy New Year !

January is Cervical Cancer Awareness Month so we decided that this month's chat topic would be cervical cancer. Some of the topics we discussed were symptoms and diagnosis, the stigma of the disease, fertility issues, HPV and the HPV vaccine. We were pleased to have Tamika Felder, survivor and founder of Tamika and Friends and Katie Brown survivor and Director of Support and Advocacy for Lungevity share their experience with us.

We had 33 participants, 379 tweets and over 980,000 impressions. A transcript from the chat can be found here.

Next chat: Clinical Trials Continued - Wednesday,  February 12, 2014 at  9pm EST


Resources:

Cervivor - a community, a learning tool, an advocacy resource, and an online retreat for healing, connecting and thriving.

http://cervivor.org/

CDC - Symptoms of Cervical Cancer

http://www.cdc.gov/cancer/cervical/basic_info/symptoms.htm

HPV Myths & Misconceptions with Fact Sheet

http://www.ashasexualhealth.org/std-sti/hpv/myths-and-misconceptions.html

CDC - HPV Vaccines

http://www.cdc.gov/hpv/vaccine.html

Postlicensure safety surveillance for quadrivalent human papillomavirus recombinant vaccine.

http://www.ncbi.nlm.nih.gov/m/pubmed/19690307/?i=4&from=cdc%20hpv%20vaccine%20adverse%20events

Sorrow and teaching in an oncologist's office - OpEd

http://articles.mcall.com/2006-07-20/opinion/3689304_1_cervical-cancer-pap-smears-new-cancer-vaccine

Skills for Thriving in Modern Times - Video

http://t.co/nNmxfIv2lS

National Cervical Cancer Coalition

http://www.nccc-online.org/

http://www.inspire.com/groups/national-cervical-cancer-coalition/

ASCO Cervical Cancer Fact Sheet

http://www.cancer.net/sites/cancer.net/files/asco_answers_cervical.pdf

100 Questions & Answers About Cervical Cancer - Book

http://www.amazon.com/gp/aw/d/0763754471

100 Questions & Answers About HPV - Book

http://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Daps&field-keywords=Amazon.com+100+Questions+%26+Answers+About+HPV&rh=i%3Aaps%2Ck%3AAmazon.com+100+Questions+%26+Answers+About+HPV

FWC: What Every Woman Should Know About Cervical Cancer - Video

http://youtu.be/mtojVs9b150

CDC Prevent Cervical Cancer Infographic

http://www.cdc.gov/cancer/cervical/basic_info/infographic.htm

Reimagine: The Other Half of Care - Video

http://youtu.be/1mkT8lnUcMo

Thriver Soup Thursdays: A Feast for Living Consciously - Blog

http://www.heidibright.com/blog

Gary Thompson Story/CLOUD, Inc. Inspiration - Article

http://penangmonthly.com/the-internets-cloud-y-future/

See you next month, 

Dee

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

http://www.pancan.org/section_about/vision_of_progress/

Woman to Woman

http://nyp.org/services/oncology/woman-to-woman-support-group.html

Stupid Cancer

http://stupidcancer.org/

Bright Pink

http://www.brightpink.org/

Sharsheret

http://sharsheret.org/

Cancer Schmancer

http://www.cancerschmancer.org/

Ovarian Cancer Discovery Deepens Knowledge of Survival Outcomes

http://www.sciencedaily.com/releases/2013/12/131209105230.htm?utm_content=bufferdfc96&utm_source=buffer&utm_medium=twitter&utm_campaign=Buffer#.UqZg3FkFCAQ.twitter

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

http://www.prweb.com/releases/2013/11/prweb11356230.htm

Tweet handles shared  

@ImermanAngels

@teaminspire

@CancerHopeNet

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

Dee

Co-moderator

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://pixelsandpills.com/2011/01/20/etools-pharma-study-patient-recruitment-digital/

Phases of Clinical Trial Overview [ INFOGRAPHIC ]

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

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

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.

• Angelina Jolie, the Thoughtful Patient http://www.huffingtonpost.com/rick-boulay-md/angelina-jolie-prophylactic-mastectomy_b_3322380.html?utm_hp_ref=tw
• Society of Gynecologic Oncologists Education Committee Statement on Risk Assessment for Inherited Gynecologic Cancer Predispositions http://d1izdzz43r5o67.cloudfront.net/guidelines/SocietyGynecologicOncologists.pdf
• Ovarian Cancer Action call for policy change on genetic testing availability www.ovarian.org.uk/news/news-and-press-releases/2013/ovarian-cancer-action-call-for-policy-change-on-genetic-testing-availability/
• foundationforwomenscancer.org
• Breast Cancer’s Link to Ovarian Cancer: It’s in Your Genes http://www.foundationforwomenscancer.org/wp-content/uploads/Breast-Cancers-Link-to-Ovarian-Cancer-Its-in-your-genes1.pdf
• Ovarian Cancer Risk Factors and Prevention http://www.cancer.net/cancer-types/ovarian-cancer/risk-factors-and-prevention
• Ovarian Cancer: Are You at Risk (with assessment quiz) http://www.ovarian.org/are_you_at_risk.php
• Genetic Information Nondiscrimination Act of 2008 http://www.genome.gov/10002328
• National Society of Genetic Counselors - Find a Genetic Counselor http://www.nsgc.org/FindaGeneticCounselor/tabid/64/Default.aspx
• My Family Health Portrait - A Tool from the Surgeon General https://familyhistory.hhs.gov/fhh-web/home.action
• Sharsheret Family Tree & Genetic Counseling Resources http://www.sharsheret.org/content/how-we-help/family-tree
• Meet Guyanna! Beating the Odds Against Ovarian Cancer (blog post) http://insideupmc.blogspot.com/2013/09/meet-guyanna-beating-odds-against.html
• The Basics of Personalized Medicine http://health.usnews.com/health-conditions/cancer/personalized-medicine
• Mayo Clinic Center for Individualized Medicine http://mayoresearch.mayo.edu/center-for-individualized-medicine/genomics-in-patient-care.asp
• The Personalization of Medicine http://health.usnews.com/health-news/hospital-of-tomorrow/articles/2013/07/12/the-personalization-of-medicine
• Living With Cancer: A Rainbow Coalition http://well.blogs.nytimes.com/2013/09/12/living-with-cancer-a-rainbow-coalition/?smid=tw-share&_r=0
• Personalized Medicine Coalition - Personalized Medicine 101 http://www.personalizedmedicinecoalition.org/about/about-personalized-medicine/personalized-medicine-101
• Ovarian cancer survivor offers insight for women http://www.baynews9.com/content/news/baynews9/news/article.html/content/news/articles/cfn/2013/9/28/ovarian_cancer_survi.html?cid=rss#.Ukcyuc3H5WY.twitter
• Clearity Foundation https://www.clearityfoundation.org/
• Caris Life Science http://www.carislifesciences.com/
• Colleen's Dream Ovarian Cancer Fact Sheet http://t.co/LneWaoWXus
• Personalized Medicine May Be Good For Patients But Bad For Drug Companies' Bottom Line http://www.forbes.com/sites/henrymiller/2013/09/25/personalized-medicine-may-be-good-for-patients-but-bad-for-drug-companies-bottom-line/
• Pop quiz: do you know what personalized medicine means? http://gigaom.com/2013/08/23/pop-quiz-do-you-know-what-personalized-medicine-means/

DAS

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.

• NCI Ovarian Cancer: http://www.cancer.gov/cancertopics/types/ovarian
• SGO Ovarian Cancer Symptoms: https://www.sgo.org/patients-caregivers-survivors/caregivers/ovarian-cancer-symptoms/
• Consensus Guidelines on the Management of Women with Abnormal Cervical Cancer Screening Tests and Cancer Precursors http://www.asccp.org/ConsensusGuidelines/tabid/7436/Default.aspx
• Been There Rocked That (for Cervical Cancer & HPV) http://www.beenthererockedthat.org/
• Mind-blowing statistics about HPV and Cancer… (blog post) http://www.girlmeetsgeek.com/2012/06/25/20-million-mind-blowing-statistics-about-hpv-and-cancer/
• OCNA Ovarian Cancer Statistics http://www.ovariancancer.org/about-ovarian-cancer/statistics/
• Ovarian Cancer Wiki http://en.wikipedia.org/wiki/Ovarian_cancer#Epidemiology
• CDC Gynecologic Cancer Symptoms http://www.cdc.gov/cancer/ovarian/basic_info/symptoms.htm
• SGO Seek A Specialist https://www.sgo.org/seek-a-specialist/
• Foundation for Women's Cancer Find a Gynecologic Oncologist http://www.foundationforwomenscancer.org/find-a-gynecologic-oncologist/
• FWC Gynecologic Cancer Awareness Month Toolkit http://www.foundationforwomenscancer.org/wp-content/uploads/GCAM-Toolkit_2013.pdf
• Menopause & Hormone Therapy http://menopausenu.org/ and article regarding launch of this site http://www.northwestern.edu/newscenter/stories/2013/07/managing-menopause-your-way.html

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


DAS

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