Rare Disease Day 2019

February 28th is Rare Disease Day® .  Rare Disease Day is an annual awareness day dedicated to elevating public understanding of rare diseases and calling attention to the special challenges faced by patients and the community.
 

In the United States, a disease is considered rare if it is believed to affect fewer than 200,000 Americans. Nearly 1 in 10 Americans live with a rare disease—affecting 30 million people—and two-thirds of these patients are children.

Do you know which diseases are considered rare diseases by the NIH's Office of Rare Diseases Research? The following ovarian cancers are considered rare:

Ovarian cancer
Ovarian carcinosarcoma
Ovarian epithelial cancer
Ovarian germ cell tumor
Ovarian low malignant potential tumor
Ovarian small cell carcinoma

To learn more about any of those ovarian cancers just click on the name above. 

Rare Disease Day takes place every year on the last day of February (February 28 or February 29 in a leap year)—the rarest date on the calendar—to underscore the nature of rare diseases and what patients face.  It was established in Europe in 2008 by EURORDIS, the organization representing rare disease patients in Europe. Rare Disease Day is sponsored in the U.S. by the NationalOrganization for Rare Disorders (NORD)®, a leading independent, non-profit organization committed to the identification, treatment, and cure of rare diseases.
 



 If you are on social media and have a rare disease you can use this template and show your stripes on this Thursday , February 28th. 

My stripes are rare. I have _____, a #raredisease. #ShowYourStripes #RareDiseaseDay {upload photo of yourself}

I'll be sharing this blog post as a way to raise awareness. 

Dee
Every Day is a Blessing!

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

A 2019 Guide to Twitter

I wrote my first  Guide to Twitter and Tweet Chats in August 2013 prior to the first #gyncsm (Gyn Cancer Social Media ) chat. This post updates that information and is in line with the current layout and usage of Twitter.

What is Twitter?  How do I get a Twitter account?

Twitter is an online social media networking site.  People who use Twitter write text messages known as “Tweets”. In 2017, Twitter raised the character limit from 140 characters to 280 characters for each tweet.

Go to twitter.com to set up an account. You will be asked to choose a twitter name and a password. People follow me on twitter at @womenofteal.  You will be asked to fill in a profile so you may add a brief description of yourself and your interests. Remember the default setting on Twitter is Public, so anything you post on Twitter will be public and available to the entire “tweetersphere”. In other words anyone, even if a person does not have a Twitter account, can read what you wrote. 

 

You can set up a protected account but you have to approve each and every one of your followers. In this case your tweets and comments are only visible to those you have approved. Check out the Help Center pages of Twitter for how to set up an account.

Once you have an account you can follow the tweets of people, companies and organizations you are interested in. You can browse categories or search for the name of the person or company you want to follow. Once you find their Twitter page just click on the “Follow” button.

What is on my Home Page?

On your Home page you will see tweets by the accounts you follow and in the column on the right side you will find suggestions of who to follow and current trends. On the menu on the top of the page you will see a house (your home page), a # (trending hashtags), a bell (notifications), an envelope (direct messages),  a search box and your photo with your name ( links to your profile page).  

 

On the # page you will see the trending hashtags in the country you reside. You will also see current news tweets as well tweets from categories based on who you follow. In my case I see Health Care News. 

If you click on the bell icon you will be brought to your notifications page. This page will show you all tweets in which your handle was used including tweets that were "loved" and retweeted. The mentions column shows all tweets that replied to one of your tweets. 

When you click on the envelope icon you are brought to the message page. On this page you can message a person privately. The person you are messaging has to follow you in order to have the message system work.

What is a hashtag ?
A hashtag is a word or phrase( no spaces) preceded by a # that identifies a topic. I post many things with #ovca which stands for ovarian cancer and #gyncsm ( gyn cancer social media). The hashtag #gyncsm stands for Gynecologic Cancer Social Media. If you search that hashtag you will see what others are posting about gynecologic cancers. You can add information, share links, and be part of the community of women diagnosed with gynecologic cancers ( ovarian, endometrial , uterine, vulvar, GTC, fallopian tube, primary peritoneal). We invite patients, survivors, families, caregivers, researchers,  and health care providers to join the conversation.  On the second Wednesday of the month the community will meet at the same time 9pm ET to discuss different topics.

 

Basic Tweeting:

 

What if I want to send a Tweet to my followers?  

On the lower right of the Twitter page you will see a blue oval with a +, a feather quill and the word Tweet.  Click on that button and a blue box will appear and asks "What's Happening". Click in the box and start typing. At the bottom right you will see a + . When you click on that you may add a photo ( mountain icon), gif, or a poll ( bar chart icon) to your Tweet. 

 

What if I want to reply to what someone wrote in a Tweet? 

Click the talk bubble on the bottom left of the Tweet and type what you want to say. A list of who you are replying to appears above the area where your text appears.

What if I want to share an interesting Tweet with those that follow me? 

Just click on the clockwise arrows (second icon from the left) at the bottom of the original tweet.  A box will appear that lists the options Retweet, Retweet with Comment, or Cancel. Retweet will share the original tweet. Retweet with Comment allows you to write text including hashtags and by clicking on the + at the bottom of the Tweet allow you to add a photo ( mountain icon), gif, or a poll ( bar chart icon) to the original Tweet.

What is on my profile page? 
Your profile page includes a cover photo as well as a profile photo along with a short bio.  The menu bar shows Tweets, Tweets and Replies, Media ( those Tweets which include photos or video) and Likes ( the Tweets of others that you liked by clicking on the heart ).

What are lists? 

A Twitter list is a group of Twitter accounts that is curated. I own a few different lists which are groups which I created of accounts that are related to specific topic. You can add to an account to a  list when you follow an account. I have a list for cancer centers which is public but I also have a few private lists for important contacts, cancer doctors etc.

 

Now you are all set to join Twitter.  I hope you to see your tweets at #gyncsm. 

Dee

Every Day is a Blessing!

Chemo Angels

Last week I heard about Chemo Angels. Below is some information they provided me about their program. 

The Chemo Angels program offers support to those who find themselves battling a cancer diagnosis and undergoing IV chemo treatment. 

     The angel volunteers support their “buddy” throughout their journey with weekly cards, uplifting messages, supportive words and lots of positive energy. The encouragement the Angels provide helps give patients the comfort and confidence of knowing they are not alone in their fight. 

     The goal of Chemo Angels is to help fuel a positive attitude and aid in the road to recovery.  

    For more information and to submit an application, please visit the web site at www.chemoangels.com

    Some recent 'graduates' of the program have shared these comments:

• " Thank you for your wonderful program - it was a great support during difficult times " (from E.P.)
• " Thank you so much!! I truly appreciate you and the angels!!! I don't know what I would've done without you all.  " (from S.S.)
• 
  
• "I would like to thank your organization and the "chemo angels" who took their time to write to me.
• It was very much appreciated at a difficult time" (from D.R.)
• " Thank you so much! Please let my Angels know how much I was uplifted by their cards and gifts." (from P.L.)
• " Thank you so much for allowing me to be the recipient of your program. My two angels were wonderful. It certainly was uplifting on my journey thru chemo!" (from D.B.)
• " Thank you for everything.  It has been an amazing experience." (from N.L.)
• " Thank you so much for this program which is so uplifting." (from D.B.)
• " Please thank both of the ladies. It was helpful to have a friendly note & inspiring prayer from them." (from E.U.)

I know when I was in chemo I appreciated every card and gift that arrived in the mail. It made me feel I had many people on my side. So check out  www.chemoangels.com whether you are a patient who would love support. Or if you are someone who would like to be an angel for a patient. All cancers types are as long as you are getting IV Chemo. 

Dee 

Every Day is a Blessing!

Research News - Jan 2019

A friend, social media guru and breast cancer survivor, Marie Ennis-O'Connor,  writes a weekly post in which she shares blog posts she found interesting from the week before.  In 15 Smart Ways to Drive More Traffic To Your Blog in Medium ( https://medium.com/@JBBC/15-effective-ways-to-drive-more-traffic-to-your-blog-75e1943b88f4) to recommended creating "a weekly round-up post on your blog".  I've been meaning to do this for a while but had trouble deciding what I wanted to share. Should it be journal articles or survivor stories or new resources or events? Earlier this week I decided to concentrate on research news and went to work creating a graphic I could use for these repeating posts.

On the last Wednesday of the month I will provide links to articles on ovarian cancer research and treatments I read during that month.

Here are some interesting articles published in January:

Current strategies for the targeted treatment of high-grade serous epithelial ovarian cancer and relevance of BRCA mutational status

"The recent addition of targeted therapies – anti-angiogenic agents and PARP inhibitors – to the pharmacologic treatments available for ovarian cancer has improved patient outcomes while increasing the available options for the traditionally difficult-to-treat disease."

Overexpression of CCDC69 activates p14^ARF/MDM2/p53 pathway and confers cisplatin sensitivity

"The aim of the study is to explore the relationship between CCDC69 expression and resistance of ovarian cancer cells to cisplatin and reveal the underlying mechanism."

Morbidity and Mortality Rates Following Cytoreductive Surgery Combined With Hyperthermic Intraperitoneal Chemotherapy Compared With Other High-Risk Surgical Oncology Procedures 

"Comparative analysis revealed CRS/HIPEC to be safe, often safer across the spectrum of NSQIP safety metrics when compared with similar-risk oncologic procedures. Patient selection was important in achieving observed outcomes. High complication rates are a misperception from early CRS/HIPEC experience and should no longer deter referral of patients to experienced centers or impede clinical trial development in the United States."

Risk of Malignant Ovarian Cancer Based on Ultrasonography Findings in a Large Unselected Population 

"According to this study, the ultrasonographic appearance of ovarian masses is strongly associated with a woman’s risk of ovarian cancer. Simple cysts are not associated with an increased risk of ovarian cancer, whereas complex cysts or solid masses are associated with a significantly increased risk of ovarian cancer."  

Prevalence of germline pathogenic BRCA1/2 variants in sequential epithelial ovarian cancer cases.

https://www.ncbi.nlm.nih.gov/pubmed/30683677/
"Our study suggests that age at diagnosis, family history of breast and/or ovarian cancer, medical history of breast cancer or a Manchester BRCA Score of ≥15 points are associated with a >10% prevalence of germline pathogenic BRCA1/2 variants in epithelial ovarian cancer.

 

 

Studies Seek to Expand on PARP Inhibitor Success in Ovarian Cancer 

https://www.onclive.com/web-exclusives/studies-seek-to-expand-on-parp-inhibitor-success-in-ovarian-cancer

Where Does Immune Checkpoint Inhibition Fit in Ovarian Cancer Treatment?

http://www.cancernetwork.com/ovarian-cancer/where-does-immune-checkpoint-inhibition-fit-advanced-ovarian-cancer-treatment

If you run across any interesting articles about ovarian cancer research please share them in the comments below or sent them to me in an e-mail.  I will be sure to add them to this page.  Knowledge is Power. (LiveSTRONG)

Dee
Every Day is a Blessing!

 

If I Reach One Woman

Over the years I have contemplated whether or not this blog is valuable to others and whether or not I should continue posting to it. I get very few comments - even spam comments - compared to the comments which the #gyncsm community blog receives. 

I think that I write this blog as much for myself as for others. . I have made some great connections through this blog. And it is a place where I can go back and reread information on tests I had or events I attended or how I felt at a specific time in this journey.

I remember how I felt when I was first diagnosed and didn't know much at all about ovarian cancer. Looking for someone who had a similar experience. So  I continue writing.

And then every few years I cross paths on another platform - Facebook group, Smart Patients, Inspire and they ask me if I am the one with the Women of Teal blog. Like this woman who last week responded to a post on another platform that I wrote about the  #gyncsm chat on Vaccines.

So great to see you on this site. I’ve read many of your Women of Teal blogs, but was never able to figure out how to reply with a thank you. So, thank you for your work and dedication to the OVC community. When I was diagnosed with stage 3 c ovc in 2015 ...  I tried to research information about this beast of a disease and somehow came upon your site. Your words helped me to deal with an overwhelming sadness. My doctors told me it would come back. The fact that you recurred and still continued to give back always stayed with me. 
( public response)

There is my answer. I will continue writing this blog.

Dee
Every Day is a Blessing.

New Year Aspirations

Another year begins!

As we welcome 2019,  I wish all my followers a very Happy and Health New Year!

If you are a regular follower you know that at the beginning of every year I don't make New Year Resolutions but rather aspirations. I tend not to feel too guilty if I don't quite get to do what I aspire to do, as you will see by the repeat aspirations below. But having concrete goals helps keep me focused.

Here are aspirations from 2018 that I will continue to work on this year.

• I aspire to continue to support women diagnosed with ovarian cancer through this blog and the  #gyncsm  community, to share my story as an ovarian cancer survivor and to promote ovarian cancer research.  ( I am excited to be attending and speaking at the ASCO Annual Meeting in June this year. More details soon.)
• I aspire to travel to Maine in 2019.  ( This has been on my list since 2016. But I'll keep trying .)
• I aspire to build an even better bond with my dog Amber so we can improve our work at the masters level in agility. ( My knee injury kept us out of the ring for the last 6 months of 2018.)  
• I aspire to go kayaking. (Once again my knee injury kept me from doing this last year.)
• I aspire to complete an online course in Genomics. (There just weren't enough hours in the day to get this done. I'm leaving this on the list though because I think this knowledge will only make me a better advocate.)

 Added to my list:

• I aspire to spend more time learning how to work with pastels. (I took an eight week art class and enjoyed the time I worked with the pastels.)
• I aspire to consistently attend yoga class. ( I dropped in on some classes in November and I felt calmer and more centered. ) 
• I aspire to step away from social media for a period of time each week and make connections in person - call or visit. 

What do you aspire to do in 2019?

Dee
Every Day is a Blessing!