Transcript of #TreatDiariesChat With EDDF as Guest Tweeters

We had an amazing #TreatDiariesChat #TweetChat last night! Thank you to everyone who attended! And, if you missed it, please feel free to view the transcript below.

myHEARTyrHANDS
Our guests 2nite are Zanetta & Nia Davis, wife & daughter of Eric Davis of @eddfoundation Welcome, ladies! #treatdiarieschat

EDDFoundation
Thanks! We are so excited to be here. #treatdiarieschat

myHEARTyrHANDS
Nia serves as Co-Founder, Chairman, and President & Zanetta serves as Co-Founder & Executive Vice-Chairman… #treatdiarieschat

myHEARTyrHANDS
it is to have been invited to guest post on behalf of @treatdiariesceo #treatdiarieschat

myHEARTyrHANDS
Q1 Can you tell us about Eric, the husband & father, the man who inspired you to found this organization? #treatdiarieschat

EDDFoundation
A1 Eric was a wonderful father and husband who was active in sports and loved spending time with his family. #treatdiarieschat

myHEARTyrHANDS
A basketball player, yes?! #treatdiarieschat

myHEARTyrHANDS
RT @EDDFoundation: Eric was a wonderful father & husband who was active in sports and loved spending time with his family.#treatdiarieschat

EDDFoundation
A1 Yes. Basketball was his favorite sport which is why we incorporated it into the foundation. #treatdiarieschat

myHEARTyrHANDS
LOVE your LOGO & the colors, too! 😉 #treatdiarieschat

EDDFoundation
Until his #sarcoma diagnosis, he was a healthy man and only 38 years old. #treatdiarieschat

myHEARTyrHANDS
Wow! SO young… #treatdiarieschat

myHEARTyrHANDS
TOO young… #treatdiarieschat

CatellyaRose
@EDDFoundation Purple is also the color for the Leiomya Sarcoma Foundation #TreatDiariesChat

myHEARTyrHANDS
I stand w/ him on his favorite color & your commitment to help others facing similar circumstances… #treatdiarieschat

myHEARTyrHANDS
That–>RT @CatellyaRose@EDDFoundation Purple is also the color for the Leiomya Sarcoma Foundation #treatdiarieschat

myHEARTyrHANDS
Q2 How was his sarcoma discovered? #treatdiarieschat

EDDFoundation
A2: He had a lump on his chest that grew. As it got bigger, he became alarmed and went to his doctor. #treatdiarieschat

myHEARTyrHANDS
RT @EDDFoundation: A2: He had a lump on his chest that grew. As it got bigger, he became alarmed and went to his doctor.#treatdiarieschat

myHEARTyrHANDS
So, he had a chest wall tumor; what kind of sarcoma? #treatdiarieschat

EDDFoundation
@CatellyaRose We provide general information on how to find clinical trials for sarcomas of any type #treatdiarieschat

CatellyaRose
@EDDFoundation what type of sarcoma was he diagnosed with? #TreatDiariesChat

EDDFoundation
Eric was ultimately diagnosed with synovial sarcoma. #treatdiarieschat

EDDFoundation
Simply sarcoma is a cancer of the soft tissue or bone #treatdiarieschat

myHEARTyrHANDS
Synovial meaning that the cancer cells were in the synovial fluid surrounding his chest wall/lungs? #treatdiarieschat

EDDFoundation
Because of that, sarcomas can appear anywhere. #treatdiarieschat

myHEARTyrHANDS
Great definition RT @EDDFoundation: Simply sarcoma is a cancer of the soft tissue or bone #treatdiarieschat

EDDFoundation
YesRT @myHEARTyrHANDS: Synovial meaning that the cancer cells were in the synovial fluid surrounding his chest wall/lungs?#treatdiarieschat

myHEARTyrHANDS
Are sarcomas common in adults? #treatdiarieschat

EDDFoundation
It helps to say its a cancer. You may not know sarcoma, but unfortunately we all know cancer. #treatdiarieschat

mererave
most synovial #sarcomas are unknown and not necessarily synovial. I know my synovial sarcoma was not #treatdiarieschat

EDDFoundation
Sarcomas are a rare cancer and even more rare in adults. Sarcomas are 15%-20% of all childhood cancers #treatdiarieschat

myHEARTyrHANDS
What is the best way to follow clinical trial outcomes in your experience? #treatdiarieschat

EDDFoundation
We provide updates on results of trials as they are published for all types of sarcoma #treatdiarieschat

myHEARTyrHANDS
🙁 RT @EDDFoundation: It helps to say its a cancer. You may not know sarcoma, but unfortunately we all know cancer. #treatdiarieschat

EDDFoundation
While Eric had synovial, there are over 50 types of sarcomas and we try to provide a voice for all. #treatdiarieschat

myHEARTyrHANDS
Fabulous! RT @EDDFoundation: We provide updates on results of trials as they are published for all types of sarcoma #treatdiarieschat

CatellyaRose
My mother has Leiomya Sarcoma which has occurred in both the soft tissue and bone. She was diagnosed at age 51 #TreatDiariesChat

EDDFoundation
Agreed. RT @mererave: most synovial #sarcomas are unknown and not necessarily synovial. I know my synovial sarcoma was not#treatdiarieschat

EDDFoundation
Q3 Treatment started with 30 days of radiation, followed by surgery to remove the tumor. #treatdiarieschat

EDDFoundation
For six months following surgery, his scans were good. When it returned in his lungs, he had chemotheraphy #treatdiarieschat

myHEARTyrHANDS
So, 5 days/week for 6 weeks, yes? #treatdiarieschat

LungCancerFaces
Late and lurking to learn more! #treatdiarieschat

myHEARTyrHANDS
@SarcomaAlliance Oh sweetheart, you can ask whatever you would like; thanks for joining us… #treatdiarieschat

EDDFoundation
Yes RT @myHEARTyrHANDS: So, 5 days/week for 6 weeks, yes? #treatdiarieschat

myHEARTyrHANDS
@LungCancerFaces We like our lurkers!:) #treatdiarieschat

EDDFoundation
He worked during radiation, so it was work all day and then treatment in the evening. #treatdiarieschat

myHEARTyrHANDS
What type of side effects surfaced and which were most challenging? #treatdiarieschat

myHEARTyrHANDS
@CatellyaRose Your mom ROCKS! #treatdiarieschat

myHEARTyrHANDS
Amazing! RT @EDDFoundation: He worked during radiation, so it was work all day and then treatment in the evening. #treatdiarieschat

CatellyaRose
@EDDFoundation Eric was very strong to have continued worked. I read that in his bio. That is OUTSTANDING! #TreatDiariesChat

EDDFoundation
@CatellyaRose Thank You! It was a struggle but work took his mind of his illness. #treatdiarieschat

myHEARTyrHANDS
What is IMRT as opposed to say proton or ionizing radiation? #treatdiarieschat

CatellyaRose
Q4 Is IMRT only used for synovial sarcomas? #TreatDiariesChat

EDDFoundation
IMRT delivers radiation with greater accuracy while reducing the risk to the surrounding healthy tissues. #treatdiarieschat

myHEARTyrHANDS
Looking back: is there anything that you would have done differently while he was fighting sarcoma? #treatdiarieschat

cindygraeff
Just want to sneak in a Q – how does bone sarcoma show itself, or become noticed? #treatdiarieschat

myHEARTyrHANDS
Sparing normal tissues CRITICAL from a #LateEffects standpoint! #treatdiarieschat

EDDFoundation
We would have laughed more. #treatdiarieschat

SarcomaAlliance
A great website is: http://t.co/hQGu3ObleG … The NCI also gives results: http://t.co/tZDaIwKUDQ … We also publish updates.#treatdiarieschat

mererave
I worked during radation until I was put on pain meds. This is my first week back at work after surgery! #synovialsarcoma #treatdiarieschat

CatellyaRose
@cindygraeff My mom had excruciating bone pain that went undiagnosed. She had to have the bone removed and then radiation#TreatDiariesChat

myHEARTyrHANDS
@cindygraeff Usually an incidental finding on plain films at least in the pediatric world r/t sports injuries… #treatdiarieschat

myHEARTyrHANDS
@mererave Congrats! #treatdiarieschat

myHEARTyrHANDS
Laughter is the best medicine for the soul… #treatdiarieschat

EDDFoundation
RT @myHEARTyrHANDS: Laughter is the best medicine for the soul… #treatdiarieschat

SarcomaAlliance
@myHEARTyrHANDS @cindygraeff #treatdiarieschat Bone sarcoma often presents as a lump. Adults should check any lump bigger than a golf ball.

myHEARTyrHANDS
Q6 are there any misconceptions surrounding #sarcomas #treatdiarieschat

mererave
AMEN! RT @myHEARTyrHANDS: Laughter is the best medicine for the soul… #treatdiarieschat

EDDFoundation
Q6 I would say the most common one is that they can be prevented. #treatdiarieschat

myHEARTyrHANDS
How? RT @EDDFoundation: Q6 I would say the most common one is that they can be prevented. #treatdiarieschat

EDDFoundation
There are no known risk factors and no early detection tests. #treatdiarieschat

treatdiaries
RT @myHEARTyrHANDS: it is to have been invited to guest post on behalf of @treatdiariesceo #treatdiarieschat

myHEARTyrHANDS
There are some sarcomas, for example, Ewing’s Sarcoma, which is what I had that are extremely sensitive to radiation… #treatdiarieschat

EDDFoundation
We were asked quite a bit if Eric’s sarcoma could have been prevented. #treatdiarieschat

myHEARTyrHANDS
Whereas, osteosarcoma is not sensitive to radiation… #treatdiarieschat

mererave
I agree RT @TheCSHF@EDDFoundation I know the struggle you have dealt with. Its Amazing to share your story with others.#treatdiarieschat

treatdiaries
RT @TheCSHF@EDDFoundation I know the struggle you have dealt with. It’s Amazing to share your story with others. #treatdiarieschat

myHEARTyrHANDS
RT @TheCSHF@EDDFoundation I know the struggle you have dealt with. Its Amazing to share your story with others. #treatdiarieschat

SarcomaAlliance
@myHEARTyrHANDS #treatdiarieschat I don’t have a short answer, but sarcoma patients can find find info here: https://t.co/nGkpRmFUvk

missbumptious
The very genetic cancer my dad had –> “@EDDFoundation: There are no known risk factors and no early detection tests.#treatdiarieschat

treatdiaries
RT @mererave: AMEN! RT @myHEARTyrHANDS: Laughter is the best medicine for the soul… #treatdiarieschat

CatellyaRose
@SarcomaAlliance where were/are u being treated… has it made a difference? #TreatDiariesChat

myHEARTyrHANDS
So, where do you turn for treatment? #treatdiarieschat

treatdiaries
RT @cindygraeff: Just want to sneak in a Q – how does bone sarcoma show itself, or become noticed? #treatdiarieschat

EDDFoundation
Because each is different, it is important to see a specialist to develop a treatment plan specific to your sarcoma. #treatdiarieschat

cindygraeff
Are there many different types of sarcomas? #treatdiarieschat

myHEARTyrHANDS
The family of #sarcomas is quite extensive, so how do you find THE best? #treatdiarieschat

CatellyaRose
Any advice for caregivers? #LeiomyaSarcoma has taken a toll on our family. #TreatDiariesChat

EDDFoundation
Eric was treated at @UTSouthwestern here in Dallas. #treatdiarieschat

EDDFoundation
At least 50 RT @cindygraeff: Are there many different types of sarcomas? #treatdiarieschat

CatellyaRose
@EDDFoundation Did he ever do to MD Anderson? #TreatDiariesChat

SarcomaAlliance
We have 2 ways 4 sarcoma survivors to talk anonymously: http://t.co/FY6RcARsjU & twice weekly chat http://t.co/j8xj5nC7rX#treatdiarieschat

cindygraeff
Damn…..RT @EDDFoundation: At least 50 RT @cindygraeff: Are there many different types of sarcomas? #treatdiarieschat

myHEARTyrHANDS
@cindygraeff The family is referred to as the PNET family: Peripheral neuro-ectodermal Tumors >/+50! #treatdiarieschat

myHEARTyrHANDS
The kicker is everyone’s sarcoma is their sarcoma; no two are exactly alike! #treatdiarieschat

SarcomaAlliance
@EDDFoundation @cindygraeff #treatdiarieschat Expect these subtypes to change as we learn more about genetics & sarcoma.

mererave
RT @myHEARTyrHANDS: The kicker is everyones sarcoma is their sarcoma; no two are exactly alike! #treatdiarieschat

myHEARTyrHANDS
Take time for yourself, too! RT @CatellyaRose: Any advice for caregivers? #LeiomyaSarcoma has taken a toll on our family.#treatdiarieschat

EDDFoundation
@CatellyaRose: MD Anderson consulted but we didn’t have to go there. #treatdiarieschat

SarcomaAlliance
@CatellyaRose We have a section for caregivers: http://t.co/IddB1mGLyU #treatdiarieschat #sarcoma

myHEARTyrHANDS
@SarcomaAlliance Absolutely, the key to cure is in the cytogenetics [the genetic makeup] of the sarcoma cells themselves.#treatdiarieschat

myHEARTyrHANDS
Q8 Who had the idea to start @eddfoundation#treatdiarieschat

EDDFoundation
@CatellyaRose find other things to do than just focus on the treatment and cancer. #treatdiarieschat

EDDFoundation
During his 2nd treatment, Eric wanted to focus on Nia’s Sweet 16 which gave us happy memories during a difficult time. #treatdiarieschat

EDDFoundation
A8: EDDF was Nia’s vision. As a child watching her Dad’s struggle she wanted to help other families. #treatdiarieschat

EDDFoundation
I felt it was important for people to know that others cared. ~ Nia #treatdiarieschat

myHEARTyrHANDS
WOW RT @EDDFoundation: A8: EDDF was Nias vision. As a child watching her Dads struggle she wanted to help other families.#treatdiarieschat

treatdiaries
RT @EDDFoundation: I felt it was important for people to know that others cared. ~ Nia #treatdiarieschat

myHEARTyrHANDS
SO important, Nia! RT @EDDFoundation: I felt it was important for people to know that others cared. ~ Nia #treatdiarieschat

EDDFoundation
As a parent, I wanted to support her dream which has helped us both by turning pain into a positive ~Zanetta #treatdiarieschat

cindygraeff
So treatment is based on the individual and their genetic makeup relating to the cancer cells? #treatdiarieschat

SarcomaAlliance
@EDDFoundation #treatdiarieschat We list #sarcoma specialists: http://t.co/VVhjfw85Xe

myHEARTyrHANDS
Let’s talk MISSION: what is the expressed mission of @eddfoundation#treatdiarieschat

Healthline
Art and Dance Therapy Can Make #Cancer Treatment Easier #treatdiarieschat http://t.co/VufIKvf1Dj

myHEARTyrHANDS
Kind of… RT @cindygraeff: So treatment is based on the individual and their genetic makeup relating to the cancer cells? #treatdiarieschat

mererave
you are NOT alone!!! @CatellyaRose #treatdiarieschat

mererave
RT @EDDFoundation: I felt it was important for people to know that others cared. ~ Nia #treatdiarieschat

SarcomaAlliance
@myHEARTyrHANDS #treatdiarieschat I wish we had more people looking for the causes so that we could prevent #sarcoma in the future.

EDDFoundation
Our mission is to increase awareness and provide financial assistance for adults with sarcoma or other rare cancers. #treatdiarieschat

myHEARTyrHANDS
@CatellyaRose You know we’ve got you covered, sister; just give a shout out or a phone call or an email… #treatdiarieschat

SarcomaAlliance
@mererave @CatellyaRose #treatdiarieschat That’s why our motto became “You are not alone” in 1999.

EDDFoundation
Our situation is not the norm. Many have to travel far to receive the specialized care necessary to fight this cancer. #treatdiarieschat

myHEARTyrHANDS
To provide the “assist”? #treatdiarieschat

EDDFoundation
Providing the assist ties into our basketball theme. Simply meaning everyone needs a helping hand. #treatdiarieschat

myHEARTyrHANDS
What does providing the assist look like through the @eddfoundation lense? #treatdiarieschat

mererave
I was lucky to have amazing doctors just miles away. Thankful that @eddfoundation can assist others not as lucky as I was#treatdiarieschat

CatellyaRose
What can we do to help the EDDFoundation? #TreatDiariesChat

EDDFoundation
An EDDF assist could mean a financial grant to help cover travel costs while in treatment. #treatdiarieschat

myHEARTyrHANDS
We have about 6 minutes left; I’d like to wrap up by asking how can we help y’all provide the assist? #treatdiarieschat

mererave
My next questions!!! RT @CatellyaRose: What can we do to help the EDDFoundation? #treatdiarieschat

EDDFoundation
It could also mean leveraging social media like tonight’s chat to bring awareness for those fighting this disease. #treatdiarieschat

myHEARTyrHANDS
Great Minds! RT @CatellyaRose: What can we do to help the EDDFoundation? #treatdiarieschat

EDDFoundation
I think more conversations like the one tonight help. #treatdiarieschat

SarcomaAlliance
@myHEARTyrHANDS @CatellyaRose #treatdiarieschat. Ditto for me. + we run a Peer to Peer Network 4 sarcoma survivorshttp://t.co/Wf3sHI9t7t

mererave
RT @EDDFoundation: I think more conversations like the one tonight help. #treatdiarieschat

connect4cancer
U already R “@myHEARTyrHANDS: 6 minutes left; I’d like to wrap up by asking how can we help y’all provide the assist? #treatdiarieschat

EDDFoundation
Its one thing to hear you have cancer. Its another to hear you have a rare cancer. #treatdiarieschat

CatellyaRose
RT @EDDFoundation: Its one thing to hear you have cancer. Its another to hear you have a rare cancer. #treatdiarieschat

EDDFoundation
Knowing that you are not alone helps those fighting. #treatdiarieschat

myHEARTyrHANDS
The collaboration that is sparked via SM channels, then taken offline has been amazing w/i our orgnaization… #treatdiarieschat

myHEARTyrHANDS
RT @CatellyaRose: RT @EDDFoundation: Its one thing to hear you have cancer. Its another to hear you have a rare cancer.#treatdiarieschat

CatellyaRose
RT @EDDFoundation: Knowing that you are not alone helps those fighting. #treatdiarieschat

CatellyaRose
RT @mererave: RT @EDDFoundation: I think more conversations like the one tonight help. #treatdiarieschat

SarcomaAlliance
@CatellyaRose #treatdiarieschat Yes, pesticides & herbicides have been linked to #sarcoma#treatdiarieschat

myHEARTyrHANDS
@connect4cancer You’re TOO sweet! #treatdiarieschat

EDDFoundation
Help us and others by telling someone about sarcoma, organize an event, or donate to a organization fighting sarcoma. #treatdiarieschat

mererave
RT @EDDFoundation: Its one thing to hear you have cancer. Its another to hear you have a rare cancer. #treatdiarieschat

mererave
I’m looking forward to joining @eddfoundation in the fight against #sarcoma #sarcomaawareness #treatdiarieschat

myHEARTyrHANDS
I think one thing everyone can do who has access to social media is tweet a/b these things & these organizations… #treatdiarieschat

CatellyaRose
@EDDFoundation Thanks for the #treatdiarieschat

SarcomaAlliance
#treatdiarieschat. We have provide thousands of $$s in assistance & we’d be thrilled to get a donation. #sarcoma http://t.co/d0SHUjEeDj

EDDFoundation
Forever grateful to @myheartyrhands and @treatdiaries for providing a forum to spotlight sarcoma #treatdiarieschat

myHEARTyrHANDS
Creating a buzz is really an accomplishment and it is the squeaky wheel that gets the oil at least where I come from… #treatdiarieschat

myHEARTyrHANDS
@eddfoundation a privilege and an honor to keep company with you all, my friends. Sarcoma is forever a part of me. #TYSVM#treatdiarieschat

cindygraeff
Will do! RT @myHEARTyrHANDS: I think one thing everyone can do who has access to social media is tweet a/b these things..#treatdiarieschat

SarcomaAlliance
@CatellyaRose #treatdiarieschat Here’s just one study linking pesticides & soft-tissue sarcoma: http://t.co/PpCUOBOL9b

myHEARTyrHANDS
Okay, it’s 9:00 in metro Atlanta, so let’s say our goodnights and let’s all have sweet dreams and big adventures! ~Steph #treatdiarieschat

mererave
God Bless!! #treatdiarieschat

EDDFoundation
Thanks everyone who shared their stories and questions. Winning the sarcoma fight will take a team effort. #treatdiarieschat

myHEARTyrHANDS
@EDDFoundation You guys are incredible; thankful to be a part of what you are doing… #treatdiarieschat

mererave
RT @myHEARTyrHANDS@EDDFoundation You guys are incredible; thankful to be a part of what you are doing… #treatdiarieschat

EDDFoundation
Back at you! RT @myHEARTyrHANDS@EDDFoundation You guys are incredible; thankful to be a part of what you are doing…#treatdiarieschat

EDDFoundation
@mererave Thank you for all your support. Praying for your continued health. #treatdiarieschat

EDDFoundation
@CatellyaRose loved chatting with you tonight. Stay encouraged. Praying for your mother’s continued healing. #treatdiarieschat

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