Showing posts with label gynecologic cancers. Show all posts
Showing posts with label gynecologic cancers. Show all posts

Wednesday, February 20, 2019

Let's Chat- A 2019 Guide to Tweet Chats

In 2013,  I wrote a two-part series called A Guide to Twitter and Tweetchat Part I   and Now Let's Chat - A Guide to Twitter and Tweet Chat Part II. I recently updated Part I ( A 2019 Guide to Twitter) and thought it would be beneficial to others if I updated the post on how to chat as well. As moderator of the #gyncsm chat I have used #gyncsm as the chat example.

What is a Tweetchat?
A Tweetchat is a virtual gathering of people discussing a particular subject. Using a unique hashtag helps identify the tweets that belong to the discussion. If you join the #gyncsm community for one of their chats ( 2nd Wed of the month at 9pm ET) you will add the hashtag #gyncsm to each tweet. The conversation happens in real time and can take place at a fast pace.
The first time I joined the #BCSM (breast cancer social media) chat back in 2013, 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. You can continue to join a chat by searching for  a hashtag ( such as #gyncsm) in the Twitter search box which brings you to the #gyncsm page . If you hit latest in the menu on the top of the page , your screen will show you the stream of tweets that include #gyncsm at that time. It will update as new tweets are posted using that hashtag.

Tweet Chat Tools
Since the #gyncsm chat began in 2013 I have had a chance to not only research tools which make it easier to participate in chats but have been able to test them out under real-life Chat conditions.The sites automatically add the hashtag to each tweet you write. In no particular order here are a few that will make participating in a chat easier.
 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 “Enter a hashtag to start” box. When the page opens you will see a box at the top of the page where you enter your tweet. The #gyncsm hashtag is automatically added to your tweet.


Below this box you will see all the tweets in the chat room. You can set the rate at which the chat window refreshes, stop and start the stream and change the "room" settings. Of course you can also Tweet, reply to, retweet and like a Tweet all from one page.  

Tchat.io ( http://www.tchat.io/) .



Once you sign in with your Twitter account and enter #gyncsm in the box next to "start Chatting" the chat page will look similar to the Tweeetchat page. A box on top of the page allows you to enter text to tweet and automatically adds the hashtag. You can hide retweets and pause the stream too.


 Below this box will be all the recent tweets which you can reply to, retweet, quote and like a Tweet.

TweetDeck (http://tweetdeck.com/)

As a moderator, TweetDeck is one of my favorite to use. Once you sign in you will be able to set up columns of information - Home, User, Notifications, Message, Followers etc.  I set mine up to show #gyncsm, my stream, my notifications, followers and messages. During a chat I usually have my New Tweet column open all the time.



When you want to use TweetDeck for a chat you can add a column ( look for the + on the left ) and choose search. In the search box on the top type in #gyncsm. (This is the column to the right of the New Tweet column in the photo above.) When you hit reply in a Tweet that tweet will appear in the blue column and you can reply below it. When you hit retweet a new window opens and you can simply retweet to your followers or click on retweet with comment. This allows you to add text. If you start a new text you will have to add the hashtag being used during the chat (#gyncsm ). I like the ability to easily add a photo to the tweet as well as schedule a tweet.

I recommend that you don’t wait till the night of the chat to sign up for these tools but test them out a day or two ahead of time. Even if the hashtag stream is not busy you can still try out different aspects of the site.

So what happens on a #gyncsm chat night?
The #gyncsm chat takes place on the second Wednesday of the month at 9pm EST. Our first chat occurred on September 11, 2013. A few minutes before the 9pm EST start time 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. The #gyncsm hashtag and other cancer communities like #bcsm, #lcsm are used all the time not just during chat time to share information of interest to our respective communities. 

The  #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 tweet a simple " statement such as "#gyncsm I'm listening"or e-mail us (gyncsm@gmail.com) with questions/comments after the chat is over.

Questions/ Discussion (9:11- 9:49pm ET) 
Each chat will have a specific discussion topic.  The moderators and our guests will be prepared to share links that relate to our night’s topic. The discussion will revolve around 4-5  questions 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 question  you are responding to. When we have special guests (authors, advocates, researchers or social workers) join us for a chat the format may be modified for those occasions. During many chats we ask participants to please  refrain from asking 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 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:
  • You may use 280 characters per tweet.
  • 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. For most health related chats transcripts are available on the communities website ( gyncsm.blogspot.com for gyncsm) or on the Symplur website. (https://www.symplur.com/healthcare-hashtags/gyncsm/) 
  •  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 person's treatment decision.


We hope you will let us and other chat moderators know if there is anything we can do to make our chat's better.

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

Dee


Thursday, October 1, 2015

It Is More Than Pink and Teal

It is about research.

In October, I see posts online from women diagnosed with ovarian cancer and other gynecologic cancers complaining and peeved about being surrounded by pink ribbons - on TV , in stores, on shirts, etc. Even women who have breast cancer write about how they see pink ribbons on items that appear to just be a way to sell products. They note that the  percentage of money earned from these products actually going to an organization is small.There are other complaints about a large breast cancer non-profit and how so much of the money raised doesn't go to research. Women with metastatic breast cancer are asking to be "seen and heard".  They want a greater amount of funds used for metastatic breast cancer research. I can understand why each person complaining or asking for recognition of ovarian cancer feels the way they do.  And believe me I have my share of teal shirts , earrings, etc and a few pink things too.  In October 2011, I even wrote a post about the "pinking" of the NFL.

My friend Christina and co-moderator of the #gyncsm chat said this on twitter.


 

So true. But what should that action be?

My life has been impacted by cancer in many ways in addition to my ovarian cancer diagnosis. My sister at the age of 42 was diagnosed with breast cancer and had a mastectomy and chemotherapy. She had a bone marrow transplant when her cancer metastasized. She passed away five years later. It has been twenty years since her passing.  And metastatic breast cancer continues to kill women - as does ovarian cancer in the ten years since my diagnosis.

Why is that? Cancer is a very complex disease. After attending medical conferences and listening to researchers I know that.  But how does spending money on items that are pink or teal for that matter make a difference?So the next time you make a donation to an organization or buy a product check out how much of the dollars raised actually goes to research.

Let's spend money on research. Because  the only way we will be able to understand cancer - breast, ovarian, kidney, lung, pancreatic   is through research.

What will you do to support cancer research?


Dee
Every Day is a Blessing!





Tuesday, September 29, 2015

So Many Hashtags

Christina,co-moderator of #gyncsm chat, and I were discussing all the hashtags used during gynecologic cancer awareness month. Christina had compiled a pretty extensive list which I added 7 hashtags too.

Here is our list so far:

#30daysofteal (OCNA)
#actonfacts (@bebrightpink)
#Breakthesilence

#endwomenscancer
#Findthetealineveryday(SROCF) 

#GCAM
#globeathon
#GynCan 
#gyncsm

#HBOCweek

#OvarianCancer  
#ovariancancerawareness 
#ovariancancerawarenessmonth

#shareitseptember (OCRF)

#takeactionnotchances (NOCC)
#teal
#tealisabigdeal 
#Tealmatterstoo
#tealmorethanjustacolor
#Tealsthedeal
#tealtakeover 
#TealTuesday 
#turnitteal 
#turnthetownteal (Turn the Towns Teal)
#turnmyselfieteal

#wearteal
#whyteal 

Did we leave any out? Please let us know. 
Wouldn't it be great if we could unite behind one or two hashtags for next year? 

Dee 
Every Day is a Blessing!

Saturday, September 26, 2015

"It's about your loved ones too" Cote De Pablo

For the past few years the CDC has been raising awareness of gynecologic cancers during Gynecologic Cancer Awareness month. They have done this through print ads and  public service announcements on the radio and TV. This year's PSA is Cote de Pablo speaking about cervical cancer and getting tested.



There are symptoms for gynecologic cancers which the CDC highlights in this year's PSA "Are you Listening" .





Dee
Every Day is a Blessing!

Thursday, May 28, 2015

Chicago, Here I Come!

Tomorrow I will be heading to Chicago for the American Society of Clinical Oncology (ASCO) Annual Meeting "Illumination and Innovation". I will be attending as a patient advocate and representing the #gyncsm( gynecologic cancer social media) Community on Twitter which I co-founded and co-moderate with Christina Lizaso.

I will be tweeting using the #gyncsm hashtag to keep the community up to date on the latest research news for those impacted by gynecologic cancers. Due to my diagnosis I admit in advance they there may be a heavy emphasis on ovarian cancer.

In order to spend my time efficiently,  I spent time the past few days finalizing my schedule. The meeting starts on Friday afternoon and ends on Tuesday afternoon. The  iPlanner on the meeting website made this planning a bit easier. I focused on the Gynecologic Cancer sessions (education and poster sessions) as well as the Patient & Survivor  and Health Services and Quality of Care sessions. There is an app for the meeting for my phone so I can log in at any time and see my schedule, maps of McCormick ( which is huge), places to eat, shuttle locations etc. You might wonder why planning ahead is so important. Well this conference is the largest  oncology conference in the world with well over 30,000 attendees. So with a packed scheduled and long walks between locations and let's not forget the Oncology Professional Hall it sure helps to have it mapped out in advance. There were so many presentations and posters to choose from: BRCA mutations and the genome atlas to managing treatment in older women to  medical diagnostics and immunotherapy just to name a few.

 The other added benefit of planning ahead is that it insures I won't miss the sessions/ posters presented by doctors I have met in the past or followed for years on Twitter. For example, I can't wait to see Dr Matthew Katz's poster on Disease-specific hashtags for online communication about cancer care. Dr Katz has been a supporter of #gyncsm community from its inception in 2013 and helped us with the Tweet Disclaimer on our blog. Another poster I don't want to miss is the one by Roisin O'Cearbhaill on Carboplatin hypersensitivity reactions in carboplatin treatment for recurrent ovarian cancer . I met Roisin a few years ago at a Kaleidoscope of Hope Foundation dinner where she received a grant for her research and having experienced a carboplatin reaction this is of particular interest to me.

I also have set aside time to meet up with other advocates in the Patient Advocate Lounge and look forward to the Tweet-up taking place on Saturday night. Evenings will be busy to with the dinners and receptions and catching up with friends from the Research Advocacy Network.

Be sure to check back frequently for updates from the meeting and if you are on Twitter be sure to follow #gyncsm and #ASCO15 for the latest news.

Lastly, I want to thank the Conquer Cancer Foundation whose support will make this trip and my meeting attendance possible.


Dee
Every Day is a Blessing!

Monday, March 30, 2015

SGO From a Distance

Due to family commitments I was unable to attend this year's SGO Annual Meeting in Chicago. I did though follow a number of advocates and physicians who were tweeting live from the event. Here are some of the high points of the sessions from Saturday and Sunday.







Ovarian Cancer:



















Clinical Trials:



Vaccines:





 Genetics/ BRCA Mutations:






Risk Reducing Surgery:



HPV:




Exercise:




I certainly appreciate the efforts of those attending the meeting to let us at home be on top of the latest research in gynecologic cancers.

Dee
Every Day is a blessing!



Sunday, March 8, 2015

Real Rock Stars

I watched NED (No Evidence of Disease) - the Movie a few nights ago. A local PBS station was broadcasting it so I set my DVR.  The documentary is about six gynecologic oncologists, talented musicians, who form a band. As NED plays concerts we get to meet some of the band member's patients and biggest fans.

I have wanted to watch the Movie since it was released but I was uncertain of how I would react to it. It turns out I experienced all the reactions I thought I would.  First, let me say I loved the music.  It was so nice to see the personal sides of the doctors.  I smiled as I watched them hug their patients because that is the type of relationship I have with my gyn onc. I nodded my head as the patients told their stories and I cried as I watched and listened to a husband whose wife had passed away.

I know there are many worthwhile quotes from the movie but these are three of my favorites.

"...Breast cancer might have pink ribbons but we have a Rock Band." And what a talented Band they are!

"Awareness is the first step." Not all gyn cancers have screening tests so being aware of changes in a women's body is important to diagnosis.

"...spirit is what makes you a woman." It is difficult to feel feminine when you have had your ovaries , fallopian tubes, uterus etc  removed  and  have no hair during treatment but this patient was so right when she talked about a woman's spirit.

Be sure to check out the movie's website ( http://www.nedthemovie.com/ ) for the broadcast schedule and the band's website (http://www.nedtheband.com )  to learn more about the band members and their music. I highly recommend NED the Movie. 

Thank You
John Boggess, M.D.
Joanie Hope, M.D.
Nimesh Nagarsheth, M.D.
William "Rusty" Robinson, M.D.
John Soper, M.D.
William Winter, M.D.
for sharing your talents - medical and musical with us. 
 
Thank You 
patients and families for sharing your narrative.



Dee

Every Day is a Blessing!





Monday, November 17, 2014

Biases and Cancer

A few days ago Dr Rick Boulay sent me a tweet with a link to his TEDx Lehigh River talk "Cancerism:  Confronting The Biases We Share". ( Dr Boulay is one of #gyncsm's healthcare advisors.) I watched the video and found myself saying "oh, that's me" and " I get it." and agreed that yes, we(patients) need hope. Please take a few minutes to watch this moving talk.



I knew the pain and suffering cancer caused as I watched family and friends go through treatment and die from the disease. I carried biases about the disease. So it isn't surprising that those biases were apparent when I was diagnosis.

My sister would vomit after chemotherapy. So when I heard I had ovarian cancer and would also need chemotherapy, what was I worried about?  Vomiting. That was it. I told my doctor I would do chemotherapy as long as I didn't have to throw up. She told me not to worry there were many new drugs to alleviate the vomiting that came with chemotherapy. And she was right except for one time which occurred right before my severe allergic reaction to carboplatin.

When I was in treatment I would not plan more than a month in advance.  I was living in 3 week segments. On week one I had chemotherapy then I had 2 weeks off and started all over again. I wasn't even sure I would get the chemotherapy treatment on time. My platelets or my white count could be low and then everything was pushed back. I had no control of my time. There were days I never got out of bed so those days just disappeared. When the weather started getting cold and my husband suggested I buy a new coat I said "no!". Why?  I was afraid to buy one. I had heard about Gilda Radner and she didn't make it. Chances were I wouldn't make it either. Why would I buy a coat I will never get a chance to use. It took me almost a year after finishing treatment to be able to plan more than 6 months in advance.


All of us - patients and healthcare providers alike - have preconceived notions about the disease. Patients are afraid and feel vulnerable. I know I was. What can we do to offer hope?

Dee
Every Day is a Blessing! 

Dee

Tuesday, September 17, 2013

Globe-athon 2013

What is a Globe-thon you ask? Is it like a Walk-athon? Is it a Marathon? 

A few years ago Foundation for Women's Cancer held a 72 hour race around the Mall in Washington DC for physicians and  gynecologic cancer survivors and advocates.  The race was a huge success. Then someone brought up the idea of  holding a walk on the same day in countries across the globe.  

Today, Globe-athon is a  coalition of participants in  60+ countries who will walk  to raise awareness, education and research of women's gynecologic cancer's. This grass-roots international relay for gynecologic cancers will take place this year on the weekend of September 29th. People will march in solidarity with each other, women diagnosed with the disease, their caregivers and health care providers.  

Here is the reason why holding Globe-thon is so important.
"Global cancer statistics indicate that gynecologic cancers accounted for 19% of the 5.1 million estimated new cancer cases, 2.9 million cancer deaths and 13 million 5-year prevalent cancer cases among women in the world.  Each year, over 230,000 women are diagnosed with Ovarian Cancer worldwide. The majority of these women will die from the disease: Ovarian Cancer is responsible for an estimated 140,000 deaths per year, worldwide. Cervical Cancer is alarmingly on the rise in South and East Asia, Latin America and Africa with the incidence and death rate higher than it has been in 30 years.  These silent and deadly diseases are a major global priority. "(Source:globethon.com)

In NJ you can join the Globe-thon by walking in the North Jersey NOCC walk in West Orange , NJ. 
Click here to register. 

For more information on Globe-thon and to help "shine a light on these under the radar, below the belt cancers" See the Globe-athon website  and follow them on twitter at 

Dee
Every Day is a Blessing!

Wednesday, August 7, 2013

#gyncsm - A Gynecologic Cancer Community on Twitter

In January this year I wrote a post titled "New Years Aspirations" for the SGO Blog page. The post  listed what I aspired to do in 2013. One of those aspirations was to help set up and participate in a regular tweet chat for gynecologic cancer survivors. I have taken part in a number of #bcsm (breast cancer social media) chats and thought it would be helpful to have a chat for women with gynecologic cancers.

In early July, I read an ASCO Connection article, "Hashtag Folksonomy for Cancer Communities on Twitter" by Matthew S. Katz, MD.  Dr Katz, who also participates in #bcsm, was thinking along the same lines I was in January. In the article, he speaks about developing a hashtag nomenclature for building online cancer communities and for sharing information and news. I recommend reading that article and the comments provided by advocates and health care professionals to learn more. You might also be interested in reading Hashtags:High Time or Half-baked.

Over the past few days I have been a part of an interesting conversation among a number individuals 
(      ) interested in developing a community for those diagnosed with gynecologic cancers.I am excited to announce that we are moving forward with a gynecologic cancer community on Twitter.  @btrfly12 has set up a twitter account for @gyncsm and the hashtag  #gyncsm ( gynecologic cancer social media) will be used for the online community of gynecologic cancers including cervical, endometrial, ovarian, primary peritoneal uterine, vulvar, and vaginal. There is still work to do regarding moderators, topics, date, time etc. so the start date for the Tweet chat is not yet finalized. If you are on Twitter be sure to follow @gyncsm for more information.  I will post additional information on this blog also.

Social media like Twitter is wonderful for sharing experiences, news and other information but there are drawbacks. Things posted on Twitter are public so there may be women who will refrain from participating due to a lack of privacy. Also a single tweet is 140 characters so at times it may be difficult to convey a complex topic but posting links may allow sharing of this type of information. I feel in the long run that the benefits will outweigh the negatives an I look forward to the first chat.


Dee
Every Day is a Blessing!


Monday, July 8, 2013

Lunch with a Twist of Teal

Calling all NJ gynecologic cancer survivors...

Click on the image for a larger version.

I plan on attending and hope to see some new faces and some old friends too.

Dee
Every Day is a Blessing!

Friday, April 12, 2013

Your Cancer Team

Below is a wonderful video by the SGO which describes the role of every member of a women's gynecologic cancer team.




Dee
Every Day is a Blessing!

Friday, September 14, 2012

OC Awareness Month #14 - Inside Knowledge...

The CDC ( Centers for Disease Control)  has done an outstanding job this year raising awareness of Women's Cancers during Gynecologic Cancer Awareness Month. They have developed the program Inside Knowledge: Get the Facts About Gynecologic Cancer. The program concentrates on the 5 main gynecologic cancers- ovarian, uterine, cervical, vaginal and vulvar.

I am so happy to see that the spokesperson for the PSA is Jenny Allen. I met Jenny a number of times and she is a great performer ( I Got Sick Then I Got Better), writer, mother and Ovarian Cancer survivor.

I urge you to check out the CDC page which includes

Help spread the word about gynecologic cancers. Thank You. 

Dee
Every Day is a Blessing!

Sunday, June 3, 2012

ASCO Friday pm - Gyn Posters

Note: I apologize for not updating my blog as frequently as I had intended to. My nook requires me to enter the posts in html- adding tags and the wifi here at McCormick has been spotty.

I arrived late Friday ,after a two hour flight delay. So I missed the personalized medicine lecture I had wanted to hear. Instead I went directly to the gynecologic cancer posters. The posters I found most interesting include: the vaccine research at UPenn, metronic oral Topotecan and pazopanib, lenalomide in recurrent OC , gamma secretase inhibitors, olaparib & xenograph models (The researcher graciously explained his work.) .Later in the day I attended the Poster Discussion sessions in which the posters are reviewed.

In the evening I attended the Focus on Research dinner. I attended ASCO last year as a Focus on Research Scholar and was pleased to be invited to this year's dinner. I met two more ovarian cancer survivors and was able to chat with this year scholars.
Dee
Every Day is a Blessing!