#GynCSM Transcript
Healthcare social media transcript of the #GynCSM hashtag.
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See #GynCSM Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | GYN Cancer | #GYNCSM @gyncsm Welcome to #gyncsm - a passionate community of gynecologic cancer survivors, caregivers, advocates and health care providers. |
| GYN Cancer | #GYNCSM @gyncsm Our co-moderators are @womenofteal @btrfly12 #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm Our health care moderators are @ShannonWestin @temkins @journeycancer and our mental health moderator @DrBeckerSchutte #gyncsm |
 | Dee Sparacio @womenofteal RT @gyncsm: Welcome to #gyncsm - a passionate community of gynecologic cancer survivors, caregivers, advocates and health care providers. |
| Dee Sparacio @womenofteal RT @gyncsm: Our health care moderators are @ShannonWestin @temkins @journeycancer and our mental health moderator @DrBeckerSchutte #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm We start out with brief intro’s - Please take a moment to introduce yourself. #gyncsm |
| Dee Sparacio @womenofteal RT @gyncsm: We start out with brief intro’s - Please take a moment to introduce yourself. #gyncsm |
 | Tanya Temkin @tanyaltee @gyncsm Hi. @tanyaltee from Berkeley here, eager to talk clinical trials #gyncsm |
| Dee Sparacio @womenofteal @tanyaltee @gyncsm Hi Tanya Great to have you with us tonight. #gyncsm |
 | Robin Martinez @RobinSmrtPtient Robin from https://t.co/WC18aFzajs here, looking forward to discussing clinical trial participation! #gyncsm |
| Dee Sparacio @womenofteal Dee here! Dx #ovca Stage3B 2005, OC research advocate, blogger & co-moderator #gyncsm |
| Dee Sparacio @womenofteal @RobinSmrtPtient Hi Robin So happy you can join us tonight #gyncsm |
 | Christina Lizaso @btrfly12 Christina Lizaso – passionate re: community engagement and cancer. I’ll be moderating as @gyncsm today. #gyncsm |
 | Clearity Foundation @ClearityFnd Clearity Foundation here! We are a non-profit that strives to improve the survival and quality of life of women with ovarian cancer. We give hope to women with OC and their families. Find out more at https://t.co/62G9nNxPhy. #gyncsm |
| Clearity Foundation @ClearityFnd Clearity exists to help women find credible info about their #ovariancancer and the treatments that can help them survive. Our goal is to understand each patient’s unique priorities and needs. #gyncsm |
| Dee Sparacio @womenofteal Congratulations to #gyncsm 's health care moderator @ShannonWestin for being one of this year’s @cure_magazine 2019 Ovarian Cancer Heroes® https://t.co/3FTHJKCT2W |
 | Lilly Trials @LillyTrials 👋 Hi all! We are working to make #clinicaltrials more engaging and accessible. Thanks for including us in tonight's #gyncsm tweet chat—excited to dive into the discussion about clinical trials. |
| Dee Sparacio @womenofteal @ClearityFnd So glad to have you with us tonight! #gyncsm |
 | M&B Sciences @mbsciencesinc Clara here! Our mission is to help individuals everywhere be able to find and = connect with the right clinical trial for them. #gyncsm |
 | Tobey @BRCAinfo Hiya #gyncsm. Always happy to support you Hope everyone is well 💗 |
| GYN Cancer | #GYNCSM @gyncsm Wonderful group gathering. If you prefer to listen only during the chat discussion, we'd love for you to tweet "#gyncsm" when you join - just to let us know you are here. #gyncsm |
| Dee Sparacio @womenofteal @LillyTrials Welcome @LillyTrials happy to have you join us tonight for this important topic. #gyncsm |
 | Sarah Temkin @temkins RT @womenofteal: Congratulations to #gyncsm 's health care moderator @ShannonWestin for being one of this year’s @cure_magazine 2019 Ovarian Cancer Heroes® https://t.co/3FTHJKCT2W |
| Christina Lizaso @btrfly12 RT @ClearityFnd: Clearity Foundation here! We are a non-profit that strives to improve the survival and quality of life of women with ovarian cancer. We give hope to women with OC and their families. Find out more at https://t.co/62G9nNxPhy. #gyncsm |
 | Christina Annunziata @CMAnnunziata Happy to join and discuss #clinicaltrials for #ovariancancer #gyncsm |
| Dee Sparacio @womenofteal @Clara_Health So glad are joining us for this important conversation. #gyncsm Clara Guides - Find and Participate in Trials https://t.co/mFt6j4GWrI |
| Dee Sparacio @womenofteal RT @gyncsm: Wonderful group gathering. If you prefer to listen only during the chat discussion, we'd love for you to tweet "#gyncsm" when you join - just to let us know you are here. #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm Pls continue intro's & welcomes - we'll start in w/ the "ground rules" :) and tips! #gyncsm |
 | The Boss Baby @Smit_Shah21 RT @LillyTrials: 👋 Hi all! We are working to make #clinicaltrials more engaging and accessible. Thanks for including us in tonight's #gyncsm tweet chat—excited to dive into the discussion about clinical trials. |
| Dee Sparacio @womenofteal @CMAnnunziata Welcome so glad you can join us tonight. Looking forward to your insights re: @the NCI trials. #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm The #gyncsm chat promotes community in a public forum. Learn more about risks/benefits: https://t.co/TipZUv1jQy |
| Dee Sparacio @womenofteal @brkthrough_crew Great to have you with us tonight! #gyncsm |
| Dee Sparacio @womenofteal #gyncsm tagged resources and referrals are not a substitute for speaking with your doctor who understands your needs and history. |
| Tanya Temkin @tanyaltee Thought I’d tweeted my intro. Tanya Temkin from Berkeley here. Surviving Stage 4 OvCa for going on two years. #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm Are you new to tweet chats? Follow hashtag #gyncsm and include it in every tweet during the next hour to engage with others about this topic. #gyncsm |
| Dee Sparacio @womenofteal RT @gyncsm: Are you new to tweet chats? Follow hashtag #gyncsm and include it in every tweet during the next hour to engage with others about this topic. #gyncsm |
| Dee Sparacio @womenofteal Remember- Twitter is an open social network & posts are public.Use a Direct Messages to exchange email addresses/personal info #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm Tonight on #gyncsm we are discussing: Getting Into a Clinical Trial. Topic 1 (T1:) coming up... |
| Dee Sparacio @womenofteal Thank you to all who have tweeted during the past month with the #gyncsm hashtag and those who RT'd about this chat #gyncsm |
| Christina Annunziata @CMAnnunziata @womenofteal @ShannonWestin @cure_magazine Congrats @ShannonWestin a true champion for women #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm Feel free to contact us during our after the chat via DM or the email listed on our blog https://t.co/oAfi7Me49e #gyncsm |
| Dee Sparacio @womenofteal RT @gyncsm: Feel free to contact us during our after the chat via DM or the email listed on our blog https://t.co/oAfi7Me49e #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm We’ll use a Topic format with T1:, T2:, etc. posed from this handle. Include the corresponding T1:, T2:, etc. at the front of your answer/comment. There are 6 Topic questions tonight followed by a Today I Learned (TIL) segment #gyncsm |
 | NCI Cancer Stats @NCICancerStats 71% of individuals diagnosed with vulvar cancer survive 5 years or more. Learn more about vulvar cancer here: https://t.co/mm4gXjJnPT #GynCSM https://t.co/pnRMkhckul |
 | mary @zebrafinch RT @gyncsm: Feel free to contact us during our after the chat via DM or the email listed on our blog https://t.co/oAfi7Me49e #gyncsm |
| Dee Sparacio @womenofteal RT @gyncsm: We’ll use a Topic format with T1:, T2:, etc. posed from this handle. Include the corresponding T1:, T2:, etc. at the front of your answer/comment. There are 6 Topic questions tonight followed by a Today I Learned (TIL) segment #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm You can find a list of the upcoming topic questions on our #gyncsm blog page: https://t.co/u1nFVpvz7Z #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm T1: Before looking for trials, what information do patients need? What is helpful to consider/decide ahead of time? #gyncsm |
| Dee Sparacio @womenofteal RT @gyncsm: T1: T1: Before looking for trials, what information do patients need? What is helpful to consider/decide ahead of time? #gyncsm |
 | Michele Rhee @michelerhee Hi! Michele from Boston here. #AYACSM advocate & #gyncsm supporter! https://t.co/btaweUdnby |
| Christina Lizaso @btrfly12 RT @gyncsm: You can find a list of the upcoming topic questions on our #gyncsm blog page: You can find a list of the upcoming topic questions on our #gyncsm blog page: https://t.co/u1nFVpvz7Z #gyncsm |
| Christina Lizaso @btrfly12 RT @gyncsm: T1: T1: Before looking for trials, what information do patients need? What is helpful to consider/decide ahead of time? #gyncsm |
| Dee Sparacio @womenofteal @michelerhee Great to have you join us tonight Michele! #gyncsm |
| Lilly Trials @LillyTrials T1: When considering a clinical trial, there are logistical and procedural details to factor in. Check out this list of 10 things to know for more: https://t.co/5Ptm5qhb7t #gyncsm |
| Sarah Temkin @temkins T1 it's important to know your medical history before looking for a #clinicaltrial. Type of cancer, stage, prior treatment. #gyncsm |
| Clearity Foundation @ClearityFnd T1: Clinical trials can work for women at any point in their #ovariancancer experience and should be considered along with standard of care. Physicians may not always suggest a trial. It's important to speak up and ask questions. Find out more at: https://t.co/CB4ZIv8hGd #gyncsm |
| Dee Sparacio @womenofteal RT @LillyTrials: T1: T1: When considering a clinical trial, there are logistical and procedural details to factor in. Check out this list of 10 things to know for more: https://t.co/5Ptm5qhb7t #gyncsm |
| Dee Sparacio @womenofteal RT @temkins: T1 it's important to know your medical history before looking for a #clinicaltrial. Type of cancer, stage, prior treatment. #gyncsm |
| Michele Rhee @michelerhee @womenofteal So happy I could make it! My schedule has been so hectic that I haven’t been able to make a #GYNCSM chat in way too long!! |
| Clearity Foundation @ClearityFnd T1: To be eligible for clinical trials, timing is everything. If you begin treatment without considering trials, you may later find you are ineligible for some trials. For more info on #clinicaltrial basics, please visit: https://t.co/r3VFfhBXE5 #gyncsm |
| Dee Sparacio @womenofteal RT @ClearityFnd: T1: T1: Clinical trials can work for women at any point in their #ovariancancer experience and should be considered along with standard of care. Physicians may not always suggest a trial. It's important to speak up and ask questions. Find out more at: https://t.co/CB4ZIv8hGd #gyncsm |
| Robin Martinez @RobinSmrtPtient T1: How far and how often am I willing to travel to a trial site? Are any trials located near family or friends I can stay with? #gyncsm |
| Christina Lizaso @btrfly12 T1: It is important to learn some of the basics about trials - like what the different phases mean (Phase 1,2,3) but then you also need to gather the basics of your own diagnosis - type/subtype/stage. #gyncsm |
| M&B Sciences @mbsciencesinc A1: Before starting to look for trials, it can be helpful to read about the differences between standard care and receiving treatment as part of a trial. We wrote a guide highlighting the differences here! https://t.co/SBzm4fSFQL … #gyncsm |
| Dee Sparacio @womenofteal RT @btrfly12: T1: T1: It is important to learn some of the basics about trials - like what the different phases mean (Phase 1,2,3) but then you also need to gather the basics of your own diagnosis - type/subtype/stage. #gyncsm |
| Christina Lizaso @btrfly12 RT @ClearityFnd: T1: T1: Clinical trials can work for women at any point in their #ovariancancer experience and should be considered along with standard of care. Physicians may not always suggest a trial. It's important to speak up and ask questions. Find out more at: https://t.co/CB4ZIv8hGd #gyncsm |
| Christina Lizaso @btrfly12 @michelerhee @womenofteal yay :) #gyncsm |
| Sarah Temkin @temkins Also before looking for a #clinicaltrial it's important to think about whether you are willing to travel. #gyncsm |
| Christina Lizaso @btrfly12 RT @RobinSmrtPtient: T1: T1: How far and how often am I willing to travel to a trial site? Are any trials located near family or friends I can stay with? #gyncsm |
| Dee Sparacio @womenofteal T1 I considered the extra time I would need to be at the cancer center, what phase trial , side effects of the treatment I would get in the trial. #gyncsm |
| Dee Sparacio @womenofteal RT @Clara_Health: A1: A1: Before starting to look for trials, it can be helpful to read about the differences between standard care and receiving treatment as part of a trial. We wrote a guide highlighting the differences here! https://t.co/SBzm4fSFQL … #gyncsm |
| Christina Lizaso @btrfly12 T1: Gathering your medical records will be a big step - copies of scans included. You may have to do the heavy lifting on organizing and sharing your own medical data. #gyncsm |
| Sarah Temkin @temkins RT @btrfly12: T1: T1: Gathering your medical records will be a big step - copies of scans included. You may have to do the heavy lifting on organizing and sharing your own medical data. #gyncsm |
 | Mimi @Mimiinmendon @gyncsm #gyncsm Hello-Mary-Ellen here. HBOC family. BRCA2. 2/5/19 marked 6 yrs from dx of FTC-2A, detected during risk reducing surgery. 1/2/19 marks 4 yrs out from DCIS, also detected during risk reducing surgery. NED. |
 | Heather Swift Morrison @heatherswifty RT @ClearityFnd: T1: T1: Clinical trials can work for women at any point in their #ovariancancer experience and should be considered along with standard of care. Physicians may not always suggest a trial. It's important to speak up and ask questions. Find out more at: https://t.co/CB4ZIv8hGd #gyncsm |
 | Shannon Westin, MD, MPH, FASCO @ShannonWestin Thank you so much!! Sorry to be joining late - happy to be here! #gyncsm |
| Sarah Temkin @temkins RT @ClearityFnd: T1: T1: Clinical trials can work for women at any point in their #ovariancancer experience and should be considered along with standard of care. Physicians may not always suggest a trial. It's important to speak up and ask questions. Find out more at: https://t.co/CB4ZIv8hGd #gyncsm |
| Michele Rhee @michelerhee T1: at any point in decision making, patients need to know a much as they can about their disease state/progression, resources (financial, logistical, medical team, etc.), & approved treatment/therapy options. Without that info, it’s hard to make an informed choice. #gyncsm |
| Dee Sparacio @womenofteal @Mimiinmendon @gyncsm Welcome Mary Ellen . Thanks for joining us tonight and introducing yourself. #gyncsm |
| Christina Lizaso @btrfly12 T1: Yes, you need to think about your own comfort with travel, number of scans, and scheduling needs. Having things in mind before you search can help narrow things down. #gyncsm |
| Dee Sparacio @womenofteal RT @michelerhee: T1: T1: at any point in decision making, patients need to know a much as they can about their disease state/progression, resources (financial, logistical, medical team, etc.), & approved treatment/therapy options. Without that info, it’s hard to make an informed choice. #gyncsm |
| Dee Sparacio @womenofteal @ShannonWestin Waving Hi! Glad you made it. So Proud to have you on our team.#gyncsm |
| Lilly Trials @LillyTrials @RobinSmrtPtient Love this idea of considering how your personal network can help make the logistics of participation a bit easier. #gyncsm |
| Shannon Westin, MD, MPH, FASCO @ShannonWestin T1: So many things to think about when considering a #clinicaltrial - logistics, travel, side effects and the goals of the trial are all critical! #gyncsm |
| Tobey @BRCAinfo T1 clinical trials require close medical monitoring. You need to plan on extra doctor/testing time #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm Topic 2 (T2:) coming up... https://t.co/u1nFVpvz7Z #gyncsm |
| Michele Rhee @michelerhee T1: Knowing if you have the right medical team is *really* important. Are you aligned on your goals & the path to get you there? Are you aligned on how much risk you’re willing to accept? How conservative you want to be? #gyncsm |
| M&B Sciences @mbsciencesinc RT @michelerhee: T1: T1: Knowing if you have the right medical team is *really* important. Are you aligned on your goals & the path to get you there? Are you aligned on how much risk you’re willing to accept? How conservative you want to be? #gyncsm |
| Dee Sparacio @womenofteal RT @michelerhee: T1: T1: Knowing if you have the right medical team is *really* important. Are you aligned on your goals & the path to get you there? Are you aligned on how much risk you’re willing to accept? How conservative you want to be? #gyncsm |
| M&B Sciences @mbsciencesinc RT @LillyTrials: T1: T1: When considering a clinical trial, there are logistical and procedural details to factor in. Check out this list of 10 things to know for more: https://t.co/5Ptm5qhb7t #gyncsm |
| M&B Sciences @mbsciencesinc RT @btrfly12: T1: T1: Gathering your medical records will be a big step - copies of scans included. You may have to do the heavy lifting on organizing and sharing your own medical data. #gyncsm |
| M&B Sciences @mbsciencesinc RT @btrfly12: T1: T1: It is important to learn some of the basics about trials - like what the different phases mean (Phase 1,2,3) but then you also need to gather the basics of your own diagnosis - type/subtype/stage. #gyncsm |
| Robin Martinez @RobinSmrtPtient @LillyTrials, knowing family or friends are close to trial sites has factored in making participation easier for people I know. #gyncsm |
| Dee Sparacio @womenofteal @michelerhee Yes really important to understand the risk and your goals. #gyncsm |
| Christina Lizaso @btrfly12 T1: Keeping your current doctors informed of you goals is important. Keep them in the loop that you are looking for trials and use them as sounding boards and for their expertise. #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm T2: Where can patients search for trials? What keywords are helpful? Are there specific search sites for gyn cancers? #gyncsm |
| Dee Sparacio @womenofteal RT @gyncsm: T2: T2: Where can patients search for trials? What keywords are helpful? Are there specific search sites for gyn cancers? #gyncsm |
| Christina Lizaso @btrfly12 RT @gyncsm: T2: T2: Where can patients search for trials? What keywords are helpful? Are there specific search sites for gyn cancers? #gyncsm |
| Clearity Foundation @ClearityFnd T2: Our Guided Trial Finder is the only #ovariancancer focused clinical trial search engine that currently exists, free of charge. To find a trial, click here: https://t.co/r4T1DHaTXt #gyncsm |
| Robin Martinez @RobinSmrtPtient T2: If you don't find enough trials for your specific cancer, look for trials for "solid tumors" that use drugs you might want. #gyncsm |
| Sarah Temkin @temkins Your doctor should want to discuss the possibility of #Clinicaltrials with you. And help decide what's right for you. #gyncsm |
| Sarah Temkin @temkins RT @ClearityFnd: T2: T2: Our Guided Trial Finder is the only #ovariancancer focused clinical trial search engine that currently exists, free of charge. To find a trial, click here: https://t.co/r4T1DHaTXt #gyncsm |
| Dee Sparacio @womenofteal T2 I search https://t.co/l2bOXKkE9Q with a variety of keywords ( ovarian cancer, phase (?), recurrent, etc and narrow the search to currently recruiting . #gyncsm |
| Dee Sparacio @womenofteal RT @ClearityFnd: T2: T2: Our Guided Trial Finder is the only #ovariancancer focused clinical trial search engine that currently exists, free of charge. To find a trial, click here: https://t.co/r4T1DHaTXt #gyncsm |
| Clearity Foundation @ClearityFnd T2: Our Clinical Trial Finder will help narrow down your options for OC #clinicaltrials based on your clinical situation (e.g. newly diagnosed, recurred), prior treatments, presence or absence of measurable disease, & more (location, trial phase). https://t.co/qoecVS4kFu #gyncsm |
| Dee Sparacio @womenofteal @RobinSmrtPtient Good advice. #gyncsm |
| Tobey @BRCAinfo @gyncsm T2 https://t.co/d2fA6t1EsS is a biggie #gyncsm |
| Christina Lizaso @btrfly12 T2: While https://t.co/Esx0UiOpXe has gotten more user friendly... it is still pretty intimidating. Some nonprofits have their own search and have navigators. Some online patient communities have their own search and there are startups trying to make the process easier. #gyncsm |
| Robin Martinez @RobinSmrtPtient T2: Also use different search terms to see if you can find better trials. (Expand from drug name to drug class, for example.) #gyncsm |
| Lilly Trials @LillyTrials T2: Search engines on clinical trial databases like https://t.co/uqUy1BfW7l or https://t.co/Cfwm67uglb are a great place to start learning about enrolling clinical trials across conditions or diseases. #gyncsm |
| Christina Lizaso @btrfly12 RT @RobinSmrtPtient: T2: T2: If you don't find enough trials for your specific cancer, look for trials for "solid tumors" that use drugs you might want. #gyncsm |
| Dee Sparacio @womenofteal RT @btrfly12: T2: T2: While https://t.co/Esx0UiOpXe has gotten more user friendly... it is still pretty intimidating. Some nonprofits have their own search and have navigators. Some online patient communities have their own search and there are startups trying to make the process easier. #gyncsm |
| Michele Rhee @michelerhee T2: the traditional site is https://t.co/DiUGuiD4p5, & it’s notoriously clunky to navigate & poorly worded. It has all the ongoing, FDA-approved studies, but they’re not always updated well. #gyncsm |
| Dee Sparacio @womenofteal RT @LillyTrials: T2: T2: Search engines on clinical trial databases like https://t.co/uqUy1BfW7l or https://t.co/Cfwm67uglb are a great place to start learning about enrolling clinical trials across conditions or diseases. #gyncsm |
| Shannon Westin, MD, MPH, FASCO @ShannonWestin T2: To find a #clinicaltrial - there are a number of key resources. Your MD can help, as can a local research navigator. Search engines like https://t.co/6pnwXr7QXE or local institution websites can help too! #gyncsm |
| Sarah Temkin @temkins https://t.co/8XWdQmnVqJ can be very overwhelming. The advanced search function can help look for specific locations or drug. And remember to look for trials that are currently accruing. #gyncsm |
| Christina Lizaso @btrfly12 T2: As trials are changing to target mutations vs. site of origin, figuring out keywords is getting trickier I think... #gyncsm |
| Tanya Temkin @tanyaltee T2: Clearity’s search tool for clinicaltrials is user friendly. The Emerging Med site looks promising (the clinical search tool done with SHARE). And FORCE has a clinical trial search tool specific to hereditary cancers. #gyncsm |
| Dee Sparacio @womenofteal @michelerhee True , there may be a site closer to you but has not been added . Best to call main number. #gyncsm |
| Christina Lizaso @btrfly12 RT @RobinSmrtPtient: T2: T2: Also use different search terms to see if you can find better trials. (Expand from drug name to drug class, for example.) #gyncsm |
| Dee Sparacio @womenofteal RT @ShannonWestin: T2: T2: To find a #clinicaltrial - there are a number of key resources. Your MD can help, as can a local research navigator. Search engines like https://t.co/6pnwXr7QXE or local institution websites can help too! #gyncsm |
| M&B Sciences @mbsciencesinc T2: okay I mean this is going to sound like a shameless plug BUT https://t.co/wdhLgrX5v8 We offer 24/7 live support, a friendly interface, and help manage every step from application to enrollment and beyond for every patient, for free. #gyncsm |
| Dee Sparacio @womenofteal RT @tanyaltee: T2: T2: Clearity’s search tool for clinicaltrials is user friendly. The Emerging Med site looks promising (the clinical search tool done with SHARE). And FORCE has a clinical trial search tool specific to hereditary cancers. #gyncsm |
| Michele Rhee @michelerhee T2: You search for your cancer, scroll thru all the studies to find one that’s relevant. When you find one, scroll to the bottom to find the study sites with contact info. The best option is to have your doctor contact the site. #gyncsm |
| Robin Martinez @RobinSmrtPtient T2: If you are getting too many or non-suitable trials, use filters to refine your search (interventional trial, recruiting, state) #gyncsm |
| Christina Lizaso @btrfly12 T2: To find @theNCI trials, they have their own finder and an 800 number with navigators https://t.co/tDSmniYjj0 #gyncsm |
| Christina Annunziata @CMAnnunziata T1: clinical trials can take many forms. phase 1 trials often include several different types of cancer #gyncsm |
| Michele Rhee @michelerhee T2: lol, @Clara_Health’s live support is spectacular. I know a patient they helped get connected to a clinical trial site that wasn’t responding. The patient got enrolled in the study. #gyncsm |
| Christina Annunziata @CMAnnunziata T1: @theNCI provides some basic info https://t.co/J6sNATK34V #gyncsm |
| Christina Lizaso @btrfly12 Very thankful that @Clara_Health @smart_patients @LillyTrials and others are working to help connect patients to trials and thankful for you sharing your insights with #gyncsm |
| Robin Martinez @RobinSmrtPtient T2: Practice really helps in using the different trial search databases. Each one is different in structure. #gyncsm |
| Dee Sparacio @womenofteal T2 @SGO_org has a clinical trial glossary to help understand the terms used https://t.co/yB6918aDDT #gyncsm |
| Dee Sparacio @womenofteal RT @btrfly12: T2: T2: To find @theNCI trials, they have their own finder and an 800 number with navigators https://t.co/tDSmniYjj0 #gyncsm |
| Christina Lizaso @btrfly12 RT @RobinSmrtPtient: T2: T2: If you are getting too many or non-suitable trials, use filters to refine your search (interventional trial, recruiting, state) #gyncsm |
| Dee Sparacio @womenofteal RT @CMAnnunziata: T1: T1: clinical trials can take many forms. phase 1 trials often include several different types of cancer #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm T3: coming up... #gyncsm |
| Dee Sparacio @womenofteal RT @CMAnnunziata: T1: T1: @theNCI provides some basic info https://t.co/J6sNATK34V #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm T3: What should patients look for in a trial? Where can patients get help on the terminology used in trial listings? What are eligibility criteria? #gyncsm |
| Dee Sparacio @womenofteal RT @btrfly12: Very thankful that @Clara_Health @smart_patients @LillyTrials and others are working to help connect patients to trials and thankful for you sharing your insights with #gyncsm |
| Dee Sparacio @womenofteal @btrfly12 @Clara_Health @smart_patients @LillyTrials And @ClearityFnd too. #gyncsm |
| Dee Sparacio @womenofteal RT @gyncsm: T3: T3: What should patients look for in a trial? Where can patients get help on the terminology used in trial listings? What are eligibility criteria? #gyncsm |
| Sarah Temkin @temkins Phase 1 #clinicaltrials can often provide drugs with good scientific rationale that might not be available for the disease site especially for rare tumors. Don't count them out because the endpoint is safety. #gyncsm |
| Lilly Trials @LillyTrials 'Advanced cancers' can be another useful search term. Current trial designs often allow for research of more than one tumor type in one study. #gyncsm |
| M&B Sciences @mbsciencesinc @btrfly12 @smart_patients @LillyTrials not as thankful as we are for people like you sharing the wisdom you've earned to help us design things that can eventually help more patients in more places more often. #gyncsm https://t.co/pOhcP0PaV1 |
| M&B Sciences @mbsciencesinc RT @womenofteal: @btrfly12 @Clara_Health @smart_patients @LillyTrials And @ClearityFnd too. #gyncsm |
| M&B Sciences @mbsciencesinc RT @btrfly12: Very thankful that @Clara_Health @smart_patients @LillyTrials and others are working to help connect patients to trials and thankful for you sharing your insights with #gyncsm |
 | Suzie Siegel @SuzieSiegel Late to #gyncsm chat. #Sarcoma nonprofits may list #ClinicalTrials available to women with gyn sarcomas or help them navigate. @SARCtrials is another source for clinical-trial information. |
 | Ovarian Cancer Proj @WNYOCP #gyncsm We want to see more trials for women with disease that cannot be biopsied! |
| Michele Rhee @michelerhee T3: Each person has their own trial preferences, but if you ever feel like you’re being pressured to sign up for a trial without the time to make an informed decision, DO NOT CONSENT. It’s not informed consent if you don’t have time to be informed. #gyncsm |
| Christina Lizaso @btrfly12 T3: Whether the trial is open AND currently accepting patients is definitely important to figure out. Then you can start looking into if you qualify - some things may keep you out (exclusion criteria) and some will match (inclusion criteria) #gyncsm |
| M&B Sciences @mbsciencesinc @michelerhee #gyncsm https://t.co/a2vUveQEIx |
| Christina Lizaso @btrfly12 RT @LillyTrials: 'Advanced cancers' can be another useful search term. Current trial designs often allow for research of more than one tumor type in one study. #gyncsm |
| Dee Sparacio @womenofteal T3 Eligibility are the characteristics the patient has to have to take part such as - adult, cancer type, mutation(BRCA) , how many treatments the patient had #gyncsm |
| Tobey @BRCAinfo @gyncsm T3. What phase of the trial is it? Placebo? Possible side effects? Treatment plan of trial #gyncsm |
| Dee Sparacio @womenofteal RT @temkins: Phase 1 #clinicaltrials can often provide drugs with good scientific rationale that might not be available for the disease site especially for rare tumors. Don't count them out because the endpoint is safety. #gyncsm |
| M&B Sciences @mbsciencesinc COSIGN: @ClearityFnd is friggin fantastic. #gyncsm |
| Dee Sparacio @womenofteal RT @SuzieSiegel: Late to #gyncsm chat. #Sarcoma nonprofits may list #ClinicalTrials available to women with gyn sarcomas or help them navigate. @SARCtrials is another source for clinical-trial information. |
| Christina Lizaso @btrfly12 T3: @theNCI dictionary of cancer terms is helpful as your read through trial descriptions: https://t.co/G6okqor6c5 #gyncsm |
| Christina Annunziata @CMAnnunziata T2: There are several key trials specifically for women with gyn cancers. some can be found through @NCICCR_WMB https://t.co/mtJLlO1aIy #gyncsm |
| Ovarian Cancer Proj @WNYOCP T3: This keeps too many women out of current trials! #gyncsm |
| Clearity Foundation @ClearityFnd T2: At @TheClearityFnd, we are are here to help walk you through our #ovariancancer clinical trial finder and answer any questions about #clinicaltrials. Call us at (858) 657-0282 or visit https://t.co/62G9nNxPhy. #gyncsm |
 | Ann Becker-Schutte @DrBeckerSchutte RT @Clara_Health: COSIGN: COSIGN: @ClearityFnd is friggin fantastic. #gyncsm |
| Dee Sparacio @womenofteal @WNYOCP Many trials use archived tissue and do not require a new biopsy. Depends on the type of trial. #gyncsm |
| Christina Lizaso @btrfly12 Excited about @ClearityFnd finder for ovarian cancer. #gyncsm |
| Robin Martinez @RobinSmrtPtient T3: https://t.co/WC18aFzajs has an integrated glossary and members who can explain terminology and inclusion/exclusion criteria #gyncsm |
| Tanya Temkin @tanyaltee T3: I’ve seen women get excited about a clinical trial only to find out accrual isn’t happening in their area. #gyncsm |
| Suzie Siegel @SuzieSiegel T2. It's so important for women with gyn #sarcoma to understand that gynecologic resources may not have any info on their cancer. For example, info on "endometrial cancer" may have nothing on endometrial stromal sarcoma. They'll be looking at the wrong clinical trials. #gyncsm |
| Michele Rhee @michelerhee T3: @CISCRP has great resources on explaining what a clinical trial is & what eligibility criteria are. #gyncsm |
| Clearity Foundation @ClearityFnd T3: Our ‘How Trials Work’ page will walk you through the clinical trial process, common inclusion and exclusion criteria, as well as common terminology. Find out more here: https://t.co/dMg1ZAfIH2 #gyncsm |
| Dee Sparacio @womenofteal @michelerhee Great advice! You also can drop out of a trial at any time if you want to. #gyncsm |
| Christina Lizaso @btrfly12 T3: Going through each clinical trial listing can be overwhelming but there are great resources out there! Don't get discouraged. #gyncsm |
| Dee Sparacio @womenofteal RT @btrfly12: T3: T3: @theNCI dictionary of cancer terms is helpful as your read through trial descriptions: https://t.co/G6okqor6c5 #gyncsm |
| M&B Sciences @mbsciencesinc T3: We find that @ClearityFnd has really great, SPECIFIC resources that are super helpful for folks looking into gyn cancer trials. #gyncsm |
| Dee Sparacio @womenofteal RT @CMAnnunziata: T2: T2: There are several key trials specifically for women with gyn cancers. some can be found through @NCICCR_WMB https://t.co/mtJLlO1aIy #gyncsm |
| Clearity Foundation @ClearityFnd T3: Our Clinical Trial Finder asks questions about your specific #ovariancancer and prior treatments, so that you have a better chance of being eligible for the trials found through your search. We also explain the terms used in the trial descriptions. #gyncsm |
| Mimi @Mimiinmendon T2 #gyncsm |
| Dee Sparacio @womenofteal RT @RobinSmrtPtient: T3: T3: https://t.co/WC18aFzajs has an integrated glossary and members who can explain terminology and inclusion/exclusion criteria #gyncsm |
| Ann Becker-Schutte @DrBeckerSchutte RT @ClearityFnd: T3: T3: Our Clinical Trial Finder asks questions about your specific #ovariancancer and prior treatments, so that you have a better chance of being eligible for the trials found through your search. We also explain the terms used in the trial descriptions. #gyncsm |
| Ann Becker-Schutte @DrBeckerSchutte RT @Clara_Health: T3: T3: We find that @ClearityFnd has really great, SPECIFIC resources that are super helpful for folks looking into gyn cancer trials. #gyncsm |
| Lilly Trials @LillyTrials T3: Eligibility criteria, also referred to as entry criteria, are factors that allow someone to participate in a clinical trial. #gyncsm https://t.co/oYK4BBX0wi |
| GYN Cancer | #GYNCSM @gyncsm T4: When contacting the study team, what questions are important to ask? What factors need to be considered? #gyncsm |
| Robin Martinez @RobinSmrtPtient T3: Look for prior research on the drugs or approach involved; earlier stage of trial, other cancers, single vs combo treatment #gyncsm |
| Dee Sparacio @womenofteal @RobinSmrtPtient I love how you can get e-mail updates from @smart_patients on new gyn trials being opened. #gyncsm |
 | Salman @so_so1234 RT @MDAndersonNews: When faced with an aggressive type of #ovariancancer, Dana McKay found hope with @TaylorJolyn: When faced with an aggressive type of #ovariancancer, Dana McKay found hope with @TaylorJolyn: https://t.co/mD4MtsHKT8 #gyncsm #CancerMoonshot #endcancer |
| Tanya Temkin @tanyaltee @RobinSmrtPtient T3: SmartPatients also has many participants who are clinical trial savvy #gyncsm |
| Ovarian Cancer Proj @WNYOCP Many of the trials in immunotherapy are requiring biopsies #gyncsm Researchers/ Doctors pls weigh in. This is @KathleenMaxian for @WNYOCP |
| Ann Becker-Schutte @DrBeckerSchutte RT @RobinSmrtPtient: T2: T2: If you don't find enough trials for your specific cancer, look for trials for "solid tumors" that use drugs you might want. #gyncsm |
| Dee Sparacio @womenofteal RT @michelerhee: T3: T3: @CISCRP has great resources on explaining what a clinical trial is & what eligibility criteria are. #gyncsm |
| Dee Sparacio @womenofteal RT @Clara_Health: T3: T3: We find that @ClearityFnd has really great, SPECIFIC resources that are super helpful for folks looking into gyn cancer trials. #gyncsm |
| Ann Becker-Schutte @DrBeckerSchutte RT @gyncsm: T4: T4: When contacting the study team, what questions are important to ask? What factors need to be considered? #gyncsm |
| Ann Becker-Schutte @DrBeckerSchutte RT @tanyaltee: @RobinSmrtPtient T3: @RobinSmrtPtient T3: SmartPatients also has many participants who are clinical trial savvy #gyncsm |
| Ann Becker-Schutte @DrBeckerSchutte RT @womenofteal: @RobinSmrtPtient I love how you can get e-mail updates from @smart_patients on new gyn trials being opened. #gyncsm |
| Dee Sparacio @womenofteal RT @gyncsm: T4: T4: When contacting the study team, what questions are important to ask? What factors need to be considered? #gyncsm |
| Michele Rhee @michelerhee THIS. You *always* have the right to say no & leave a trial. I mean, probably talk with the study people first to see if they can accommodate your needs/concerns, but if they can’t, it’s *your* choice. #gyncsm |
 | Bob Tufts @TuftsB RT @btrfly12: Very thankful that @Clara_Health @smart_patients @LillyTrials and others are working to help connect patients to trials and thankful for you sharing your insights with #gyncsm |
| Sarah Temkin @temkins Participating in a #clinicaltrial is voluntary. #gyncsm |
| Robin Martinez @RobinSmrtPtient T4. Get exact contact name and send your materials directly using FedEx - must deliver to that exact person! Mail goes astray. #gyncsm |
| Suzie Siegel @SuzieSiegel T4. If your doctors say they have no clinical trials available for you, ask if there are any appropriate ones at other institutions. They don't always mention clinical trials elsewhere. #gyncsm |
| Tobey @BRCAinfo RT @michelerhee: THIS. You *always* have the right to say no & leave a trial. I mean, probably talk with the study people first to see if they can accommodate your needs/concerns, but if they can’t, it’s *your* choice. #gyncsm |
| Ann Becker-Schutte @DrBeckerSchutte RT @michelerhee: THIS. You *always* have the right to say no & leave a trial. I mean, probably talk with the study people first to see if they can accommodate your needs/concerns, but if they can’t, it’s *your* choice. #gyncsm |
| Christina Lizaso @btrfly12 T3: If the initial research process to find trials is overwhelming with or without navigators, there may be someone in your family who loves researching and organizing. They will appreciate being able to do something specific to help. #gyncsm |
| Christina Lizaso @btrfly12 RT @SuzieSiegel: T4. If your doctors say they have no clinical trials available for you, ask if there are any appropriate ones at other institutions. They don't always mention clinical trials elsewhere. #gyncsm |
| Michele Rhee @michelerhee @aaronjun_ Lol. Always! #gyncsm https://t.co/9ZrJolGVKb |
| M&B Sciences @mbsciencesinc T4: All this AND the logistics (time required, travel required, compensation for travel, whether caregivers are compensated for their travel, etc). Too often, we've come across protocols that are not as patient-friendly as they could have been. #gyncsm |
| Christina Lizaso @btrfly12 RT @RobinSmrtPtient: T4. Get exact contact name and send your materials directly using FedEx - must deliver to that exact person! Mail goes astray. #gyncsm |
| Lilly Trials @LillyTrials T4: Tip: Prior to meeting with the research coordinator or doctor, write down possible questions to ask. You may find it helpful to bring a friend or relative with you as another set of ears to hear the responses to your questions. #gyncsm |
| Robin Martinez @RobinSmrtPtient @Tanyaltee, yes, people are the biggest information resource on the internet! #gyncsm |
| Christina Lizaso @btrfly12 RT @michelerhee: THIS. You *always* have the right to say no & leave a trial. I mean, probably talk with the study people first to see if they can accommodate your needs/concerns, but if they can’t, it’s *your* choice. #gyncsm |
| Ann Becker-Schutte @DrBeckerSchutte RT @temkins: Participating in a #clinicaltrial is voluntary. #gyncsm |
| Ann Becker-Schutte @DrBeckerSchutte RT @RobinSmrtPtient: T4. Get exact contact name and send your materials directly using FedEx - must deliver to that exact person! Mail goes astray. #gyncsm |
| Ann Becker-Schutte @DrBeckerSchutte RT @SuzieSiegel: T4. If your doctors say they have no clinical trials available for you, ask if there are any appropriate ones at other institutions. They don't always mention clinical trials elsewhere. #gyncsm |
| Clearity Foundation @ClearityFnd T4: Prior to enrolling in a trial, specifically phase I studies, questions about the # of patients already treated, drug effectiveness & side effects are important to ask. Check out our list of helpful q's to ask when contacting the study team: https://t.co/hZevkQo55K #gyncsm |
| Ovarian Cancer Proj @WNYOCP All trials are not available at all institutions Patients must be willing to travel #gyncsm |
| Ann Becker-Schutte @DrBeckerSchutte RT @btrfly12: T3: T3: If the initial research process to find trials is overwhelming with or without navigators, there may be someone in your family who loves researching and organizing. They will appreciate being able to do something specific to help. #gyncsm |
| Dee Sparacio @womenofteal @WNYOCP @KathleenMaxian True because if you for example your level of PD 1 you will then be in a trial say with Keytruda that would not be helpful to you #gyncsm |
| Shannon Westin, MD, MPH, FASCO @ShannonWestin T4: You can ask them 1) what are your alternative options, 2) goals of the #clinicaltrial, 3) how long you will stay on the trial, 4) adverse events, 5) logistics/travel #gyncsm |
| Ann Becker-Schutte @DrBeckerSchutte RT @LillyTrials: T4: Tip: T4: Tip: Prior to meeting with the research coordinator or doctor, write down possible questions to ask. You may find it helpful to bring a friend or relative with you as another set of ears to hear the responses to your questions. #gyncsm |
| Christina Annunziata @CMAnnunziata T3: eligibility criteria are details describing who the clinical trial is designed for. some key points to look for: specific type of cancer, number of prior treatments, previous drugs that you have taken #gyncsm |
| Dee Sparacio @womenofteal @RobinSmrtPtient Another excellent point! #gyncsm |
| Lilly Trials @LillyTrials T4: What is the main purpose of this study? Does the study involve a placebo or a treatment that is already on the market? These are just a couple of questions to ask the study team about a clinical trial. Here's a list of more questions: https://t.co/vmXR0H5GV8 #gyncsm |
| Dee Sparacio @womenofteal RT @SuzieSiegel: T4. If your doctors say they have no clinical trials available for you, ask if there are any appropriate ones at other institutions. They don't always mention clinical trials elsewhere. #gyncsm |
| Clearity Foundation @ClearityFnd RT @Clara_Health: T4: T4: All this AND the logistics (time required, travel required, compensation for travel, whether caregivers are compensated for their travel, etc). Too often, we've come across protocols that are not as patient-friendly as they could have been. #gyncsm |
| Suzie Siegel @SuzieSiegel T4. This may sound way too simple, but be sure you know how to spell a rare cancer. You may not find a trial if you don't spell #leiomyosarcoma correctly, for example. #gyncsm |
| Christina Lizaso @btrfly12 T4: Several groups on the chat tonight and on our #gyncsm Resources page of our blog have example question lists for you to use about potential trials. No need to start from scratch :) |
| Michele Rhee @michelerhee T4: Do you feel respected? Do you feel like your concerns will be addressed? Do you feel like they have your best interests at heart? There’s a lot of other stuff...but that’s baseline. #gyncsm |
| Ann Becker-Schutte @DrBeckerSchutte RT @ClearityFnd: T4: T4: Prior to enrolling in a trial, specifically phase I studies, questions about the # of patients already treated, drug effectiveness & side effects are important to ask. Check out our list of helpful q's to ask when contacting the study team: https://t.co/hZevkQo55K #gyncsm |
| Ann Becker-Schutte @DrBeckerSchutte RT @ShannonWestin: T4: T4: You can ask them 1) what are your alternative options, 2) goals of the #clinicaltrial, 3) how long you will stay on the trial, 4) adverse events, 5) logistics/travel #gyncsm |
| Christina Lizaso @btrfly12 RT @CMAnnunziata: T3: eligibility criteria are details describing who the clinical trial is designed for. some key points to look for: T3: eligibility criteria are details describing who the clinical trial is designed for. some key points to look for: specific type of cancer, number of prior treatments, previous drugs that you have taken #gyncsm |
| Dee Sparacio @womenofteal @Clara_Health Hopefully as more patients become involved in study design this will change . #gyncsm |
| Ann Becker-Schutte @DrBeckerSchutte RT @LillyTrials: T4: T4: What is the main purpose of this study? Does the study involve a placebo or a treatment that is already on the market? These are just a couple of questions to ask the study team about a clinical trial. Here's a list of more questions: https://t.co/vmXR0H5GV8 #gyncsm |
| Christina Annunziata @CMAnnunziata T3: @ASCO and @FDAOncology have discussed loosening restrictions on eligibility criteria for clinical trials https://t.co/j5WLNQIuLU #gyncsm |
| Sarah Temkin @temkins Biopsies are usually incorporated into trials to look for biomarkers. These may not help you as a patient directly but this research may help others in the future. Ask if biopsies are optional (they might be). #gyncsm |
| Dee Sparacio @womenofteal @ClearityFnd Can also see if the drug has been tested or approved in patients with other type cancers . #gyncsm |
| Sarah Temkin @temkins RT @ShannonWestin: T4: T4: You can ask them 1) what are your alternative options, 2) goals of the #clinicaltrial, 3) how long you will stay on the trial, 4) adverse events, 5) logistics/travel #gyncsm |
| Ann Becker-Schutte @DrBeckerSchutte RT @SuzieSiegel: T4. This may sound way too simple, but be sure you know how to spell a rare cancer. You may not find a trial if you don't spell #leiomyosarcoma correctly, for example. #gyncsm |
| Dee Sparacio @womenofteal RT @LillyTrials: T4: T4: What is the main purpose of this study? Does the study involve a placebo or a treatment that is already on the market? These are just a couple of questions to ask the study team about a clinical trial. Here's a list of more questions: https://t.co/vmXR0H5GV8 #gyncsm |
| Ann Becker-Schutte @DrBeckerSchutte RT @btrfly12: T4: T4: Several groups on the chat tonight and on our #gyncsm Resources page of our blog have example question lists for you to use about potential trials. No need to start from scratch :) |
| Suzie Siegel @SuzieSiegel RT @temkins: Biopsies are usually incorporated into trials to look for biomarkers. These may not help you as a patient directly but this research may help others in the future. Ask if biopsies are optional (they might be). #gyncsm |
| Ann Becker-Schutte @DrBeckerSchutte RT @michelerhee: T4: T4: Do you feel respected? Do you feel like your concerns will be addressed? Do you feel like they have your best interests at heart? There’s a lot of other stuff...but that’s baseline. #gyncsm |
| Dee Sparacio @womenofteal RT @michelerhee: T4: T4: Do you feel respected? Do you feel like your concerns will be addressed? Do you feel like they have your best interests at heart? There’s a lot of other stuff...but that’s baseline. #gyncsm |
| Shannon Westin, MD, MPH, FASCO @ShannonWestin @WNYOCP @KathleenMaxian I think it's a mix depending on the goals of the #clinicaltrial - we are moving from a "one size fits all" situation - and it is ideal to understand why some tumors respond to therapy and some tumors do not... biopsies help with that! #gyncsm |
| Dee Sparacio @womenofteal RT @CMAnnunziata: T3: T3: @ASCO and @FDAOncology have discussed loosening restrictions on eligibility criteria for clinical trials https://t.co/j5WLNQIuLU #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm Loving all the great information. We were tackling a lot in one chat, so moving along to T5 next... This is I believe our 4th chat about trials and still so much to cover! #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm T5: How can patients best prepare for the onsite interview? What is a study protocol? What is informed consent? #gyncsm |
| M&B Sciences @mbsciencesinc IT'S 2019 CONSENT IS ENTHUSIASTIC CONSENT OR IT'S NOT CONSENT AT ALL #GYNCSM |
| Dee Sparacio @womenofteal RT @ShannonWestin: @WNYOCP @KathleenMaxian I think it's a mix depending on the goals of the #clinicaltrial - we are moving from a "one size fits all" situation - and it is ideal to understand why some tumors respond to therapy and some tumors do not... biopsies help with that! #gyncsm |
| Ovarian Cancer Proj @WNYOCP Patients concerned with costs Check out trials @theNCI Clinic in Bethesda #ovariancancer They do not charge any $ #gyncsm |
| Dee Sparacio @womenofteal RT @gyncsm: T5: T5: How can patients best prepare for the onsite interview? What is a study protocol? What is informed consent? #gyncsm |
| Ann Becker-Schutte @DrBeckerSchutte RT @CMAnnunziata: T3: T3: @ASCO and @FDAOncology have discussed loosening restrictions on eligibility criteria for clinical trials https://t.co/j5WLNQIuLU #gyncsm |
| Tanya Temkin @tanyaltee Many women are afraid of joining a clinical trial, finding it benefits them—-and then finding they can’t continue the beneficial treatment when trial ends. This comes up in FB OVCA groups. #gyncsm |
| Ann Becker-Schutte @DrBeckerSchutte RT @temkins: Biopsies are usually incorporated into trials to look for biomarkers. These may not help you as a patient directly but this research may help others in the future. Ask if biopsies are optional (they might be). #gyncsm |
| Dee Sparacio @womenofteal RT @Clara_Health: IT'S 2019 CONSENT IS ENTHUSIASTIC CONSENT OR IT'S NOT CONSENT AT ALL #GYNCSM |
| Robin Martinez @RobinSmrtPtient T5: Go to onsite interview looking as healthy as possible! Walk tall, be groomed, be alert and responsive. Impress them! #gyncsm |
| Dee Sparacio @womenofteal RT @WNYOCP: Patients concerned with costs Check out trials @theNCI Clinic in Bethesda #ovariancancer They do not charge any $ #gyncsm |
| Christina Lizaso @btrfly12 RT @gyncsm: T5: T5: How can patients best prepare for the onsite interview? What is a study protocol? What is informed consent? #gyncsm |
| Sarah Temkin @temkins T4 consider whether you are willing to risk toxicity. The side effects of the experimental intervention might not be well understood. #gyncsm |
| Shannon Westin, MD, MPH, FASCO @ShannonWestin T5: the study protocol is the "cookbook" that must be followed during the implementation of a #clinicaltrial - it guides the investigators on who can go on, how to give the drugs, and how to manage side effects #gyncsm |
| Christina Lizaso @btrfly12 This from Robin is one of my favorite tips because I would have never thought of it like this. And also just like an interview - you are interviewing them as well - needs to be match on both sides #gyncsm |
| Tobey @BRCAinfo @gyncsm T5 informed consent. You agree knowing the possible consequences #gyncsm |
| Dee Sparacio @womenofteal RT @ShannonWestin: T5: T5: the study protocol is the "cookbook" that must be followed during the implementation of a #clinicaltrial - it guides the investigators on who can go on, how to give the drugs, and how to manage side effects #gyncsm |
| Michele Rhee @michelerhee This could really apply to anything. Clinical trials, physical touch, anything. #enthusiasticconsent #gyncsm |
| Robin Martinez @RobinSmrtPtient T5: Study protocol: complete outline of study often looks intimidating. Ask about what you don't understand. Write down trial NUMBER #gyncsm |
| Ann Becker-Schutte @DrBeckerSchutte RT @btrfly12: This from Robin is one of my favorite tips because I would have never thought of it like this. And also just like an interview - you are interviewing them as well - needs to be match on both sides #gyncsm |
| Ann Becker-Schutte @DrBeckerSchutte RT @ShannonWestin: T5: T5: the study protocol is the "cookbook" that must be followed during the implementation of a #clinicaltrial - it guides the investigators on who can go on, how to give the drugs, and how to manage side effects #gyncsm |
| Dee Sparacio @womenofteal T5 : Bring a Caregiver/ friend . Two ears are better than one. Have some questions written out ahead of time, take notes. Don't be afraid to ask questions and for a tour of the treatment area. #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm Here comes the last Topic (T6:)... We'll have to save the bonus topic for another chat :) #gyncsm |
| Lilly Trials @LillyTrials T5: Informed consent is a process that occurs BEFORE the start of a clinical trial where potential participants can openly ask questions and get answers about the study. https://t.co/843uOhMsth #gyncsm |
| Lilly Trials @LillyTrials T5: Every clinical trial must have a study protocol approved by an Institutional Review Board and FDA. Key features of the study protocol are available to the public on websites like https://t.co/uqUy1BfW7l and https://t.co/Cfwm67uglb. #gyncsm https://t.co/fjWU4fPP72 |
| Shannon Westin, MD, MPH, FASCO @ShannonWestin @WNYOCP Patients with ovarian, fallopian tube, and peritoneal cancer are all included in "ovarian cancer" trials - the goal is to include as many patients as possible #gyncsm |
| M&B Sciences @mbsciencesinc T5: Have your records ready, read over the protocol (if you need help, https://t.co/wdhLgrX5v8 offers 24/7 live chat for all patients, just sayin). And remember you aren't bound to joining. Ask any question you have. #gyncsm |
| Dee Sparacio @womenofteal RT @gyncsm: Here comes the last Topic (T6:)... We'll have to save the bonus topic for another chat :) #gyncsm |
| Dee Sparacio @womenofteal RT @LillyTrials: T5: T5: Informed consent is a process that occurs BEFORE the start of a clinical trial where potential participants can openly ask questions and get answers about the study. https://t.co/843uOhMsth #gyncsm |
| Sarah Temkin @temkins T5 Making sure you have had the opportunity to ask all of your questions. A copy of the consent with study team contact information should be provided. Take a day to think it over! #gyncsm |
| Tobey @BRCAinfo @gyncsm study protocol : Objectives, methods & data collection of the disease you will be treated for under strict supervision #gyncsm |
| Ann Becker-Schutte @DrBeckerSchutte RT @michelerhee: This could really apply to anything. Clinical trials, physical touch, anything. #enthusiasticconsent #gyncsm |
| M&B Sciences @mbsciencesinc @michelerhee #gyncsm https://t.co/tHp1DO1qGJ |
| Christina Lizaso @btrfly12 RT @Clara_Health: T5: T5: Have your records ready, read over the protocol (if you need help, https://t.co/wdhLgrX5v8 offers 24/7 live chat for all patients, just sayin). And remember you aren't bound to joining. Ask any question you have. #gyncsm |
| Dee Sparacio @womenofteal @LillyTrials My cancer center also has a scientific review board to insure the trial design will provide good answers to the outcomes they are studying. #gyncsm |
| Christina Lizaso @btrfly12 RT @ShannonWestin: @WNYOCP Patients with ovarian, fallopian tube, and peritoneal cancer are all included in "ovarian cancer" trials - the goal is to include as many patients as possible #gyncsm |
| Christina Annunziata @CMAnnunziata @WNYOCP @theNCI This is true! And transportation costs are generally covered once enrolled and coming to Bethesda on a regular basis. #gyncsm |
| Dee Sparacio @womenofteal RT @ShannonWestin: @WNYOCP Patients with ovarian, fallopian tube, and peritoneal cancer are all included in "ovarian cancer" trials - the goal is to include as many patients as possible #gyncsm |
| Lilly Trials @LillyTrials @gyncsm Yes! So much to cover, so little time. Do you happen to have transcripts of past chats to share?#gyncsm |
| Christina Lizaso @btrfly12 RT @temkins: T5 Making sure you have had the opportunity to ask all of your questions. A copy of the consent with study team contact information should be provided. Take a day to think it over! #gyncsm |
| Michele Rhee @michelerhee T5: understand the inclusion/exclusion criteria (IEC). If at all possible, get the study protocol & IEC in advance so you can read it thru carefully, talk it thru with a trusted MD, & have your ?s ready. Bring someone to take notes. Make them prove they deserve YOU. #gyncsm |
| Dee Sparacio @womenofteal RT @temkins: T5 Making sure you have had the opportunity to ask all of your questions. A copy of the consent with study team contact information should be provided. Take a day to think it over! #gyncsm |
| Robin Martinez @RobinSmrtPtient T6: Look for a trial that guarantees you the treatment you want (no undesirable treatment arms in the study). #gyncsm |
| Clearity Foundation @ClearityFnd T5: How can patients best prepare for the onsite interview? What is a study protocol? What is informed consent? #gyncsm |
| M&B Sciences @mbsciencesinc T5: AND remember: Informed consent is meant to protect you, the patient. If you aren't satisfied with the answers given, if something feels off, if you need more time, that is your right as a patient. #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm T6: What advice do you have for patients who are choosing between trials when there are several options? #gyncsm |
| Dee Sparacio @womenofteal @temkins Great advice. You don't have to rush into the decision. Think it over. I talked to my PCP about the trial I was entering. #gyncsm |
| Ann Becker-Schutte @DrBeckerSchutte So much good info. #gyncsm |
| Dee Sparacio @womenofteal RT @BRCAinfo: @gyncsm study protocol : @gyncsm study protocol : Objectives, methods & data collection of the disease you will be treated for under strict supervision #gyncsm |
| Dee Sparacio @womenofteal RT @michelerhee: T5: T5: understand the inclusion/exclusion criteria (IEC). If at all possible, get the study protocol & IEC in advance so you can read it thru carefully, talk it thru with a trusted MD, & have your ?s ready. Bring someone to take notes. Make them prove they deserve YOU. #gyncsm |
| Ann Becker-Schutte @DrBeckerSchutte RT @Clara_Health: T5: T5: Have your records ready, read over the protocol (if you need help, https://t.co/wdhLgrX5v8 offers 24/7 live chat for all patients, just sayin). And remember you aren't bound to joining. Ask any question you have. #gyncsm |
| Ann Becker-Schutte @DrBeckerSchutte RT @temkins: T5 Making sure you have had the opportunity to ask all of your questions. A copy of the consent with study team contact information should be provided. Take a day to think it over! #gyncsm |
| Dee Sparacio @womenofteal RT @Clara_Health: T5: AND remember: T5: AND remember: Informed consent is meant to protect you, the patient. If you aren't satisfied with the answers given, if something feels off, if you need more time, that is your right as a patient. #gyncsm |
| Ann Becker-Schutte @DrBeckerSchutte RT @michelerhee: T5: T5: understand the inclusion/exclusion criteria (IEC). If at all possible, get the study protocol & IEC in advance so you can read it thru carefully, talk it thru with a trusted MD, & have your ?s ready. Bring someone to take notes. Make them prove they deserve YOU. #gyncsm |
| M&B Sciences @mbsciencesinc T6: Trials don't have to be the last resort. If you have the time, considering a trial could provide top-of-the-line care with cutting-edge treatments. #gyncsm |
| Dee Sparacio @womenofteal RT @Clara_Health: T6: T6: Trials don't have to be the last resort. If you have the time, considering a trial could provide top-of-the-line care with cutting-edge treatments. #gyncsm |
| Clearity Foundation @ClearityFnd T6: "Patients can check our website to see if the effectiveness and side effects of any of the trial drugs have already been reported. We show results for all standard chemotherapies and drugs in advanced clinical trials.” (1/2) #gyncsm |
| Clearity Foundation @ClearityFnd T6: "We want to make it easy to find these results so that women don't have to spend hours trying to find the right information to help them make informed choices about treatment options.” – Clearity’s Scientific Director, Dr. Deb Zajchowski (2/2) #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm @LillyTrials Yes, here's our #GYNCSM Past Topic chat summaries with links to the transcripts :) https://t.co/wiuBkTp49E Tonight's will be ready before week's end. |
| Robin Martinez @RobinSmrtPtient T6: If you find interesting treatment option but trial isn't quite right for you, look for similar trials that might fit better. #gyncsm |
| Shannon Westin, MD, MPH, FASCO @ShannonWestin T6: you can choose the right trial for you based on if it is selected for your tumor type vs. an "all comers" design. Other considerations are toxicity, logistics, and any known efficacy #gyncsm |
| Christina Lizaso @btrfly12 Love this #gyncsm |
| Dee Sparacio @womenofteal RT @RobinSmrtPtient: T6: T6: If you find interesting treatment option but trial isn't quite right for you, look for similar trials that might fit better. #gyncsm |
| Christina Lizaso @btrfly12 THIS #gyncsm |
| Christina Lizaso @btrfly12 RT @Clara_Health: T5: AND remember: T5: AND remember: Informed consent is meant to protect you, the patient. If you aren't satisfied with the answers given, if something feels off, if you need more time, that is your right as a patient. #gyncsm |
| Christina Lizaso @btrfly12 RT @RobinSmrtPtient: T6: T6: Look for a trial that guarantees you the treatment you want (no undesirable treatment arms in the study). #gyncsm |
| Lilly Trials @LillyTrials T6: If you want to learn more about the investigational drug in the study, you can search for published information in peer-reviewed medical journals. #gyncsm |
| Lilly Trials @LillyTrials T6: To help you make the decision that's best for you, consider incorporating shared decision making practices with your HCPs and caregivers. #gyncsm https://t.co/2IoxrxH37W |
| Robin Martinez @RobinSmrtPtient T6: Example, maybe Phase 3 trial has Phase 2 that is still recruiting and fits you better. #gyncsm |
| Clearity Foundation @ClearityFnd RT @Clara_Health: T6: T6: Trials don't have to be the last resort. If you have the time, considering a trial could provide top-of-the-line care with cutting-edge treatments. #gyncsm |
 | Inspire @InspireIsHealth RT @LillyTrials: T5: T5: Informed consent is a process that occurs BEFORE the start of a clinical trial where potential participants can openly ask questions and get answers about the study. https://t.co/843uOhMsth #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm We went over into our usual Today I Learned (TIL:) time but if you have closing thoughts to share on Getting Into A Clinical Trial - now is the time! Thanks for coming, sharing and learning with each other. #gyncsm |
| Dee Sparacio @womenofteal T6 Yes many larger NCI comprehensive centers have libraries that patients can use and the librarian can help get journal articles that are behind paywalls. #gyncsm |
| Dee Sparacio @womenofteal RT @gyncsm: We went over into our usual Today I Learned (TIL:) time but if you have closing thoughts to share on Getting Into A Clinical Trial - now is the time! Thanks for coming, sharing and learning with each other. #gyncsm |
| Ann Becker-Schutte @DrBeckerSchutte RT @gyncsm: We went over into our usual Today I Learned (TIL:) time but if you have closing thoughts to share on Getting Into A Clinical Trial - now is the time! Thanks for coming, sharing and learning with each other. #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm Note - There will be no #gyncsm chat in March. Save the Date! On Wed April 10, 2019 at 9pmET guest @ronny_drapkin will join us to discuss his research on where and how high-grade serous ovarian cancer starts. #gyncsm |
| Christina Annunziata @CMAnnunziata T6: consider the phase of the trial (1,2,3), whether it is randomized (some get experimental drug, some get standard care), and whether it is specifically designed for your particular type of cancer (biomarker, histology, gene mutation, etc) #gyncsm |
| Shannon Westin, MD, MPH, FASCO @ShannonWestin RT @gyncsm: Note - There will be no #gyncsm chat in March. Save the Date! On Wed April 10, 2019 at 9pmET guest @ronny_drapkin will join us to discuss his research on where and how high-grade serous ovarian cancer starts. #gyncsm |
| Dee Sparacio @womenofteal TIL that there is still so much information and advice to share within our community about clinical trials. #gyncsm |
| Dee Sparacio @womenofteal RT @gyncsm: Note - There will be no #gyncsm chat in March. Save the Date! On Wed April 10, 2019 at 9pmET guest @ronny_drapkin will join us to discuss his research on where and how high-grade serous ovarian cancer starts. #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm While #gyncsm won’t be chatting in March, there are other active cancer chats - often covering topics beyond their specific cancer. Plus many great overall healthcare chats. Check out our round-up and hope you’ll check them out: https://t.co/wYqfAZSAla |
| Dee Sparacio @womenofteal RT @CMAnnunziata: T6: T6: consider the phase of the trial (1,2,3), whether it is randomized (some get experimental drug, some get standard care), and whether it is specifically designed for your particular type of cancer (biomarker, histology, gene mutation, etc) #gyncsm |
| Dee Sparacio @womenofteal RT @gyncsm: While #gyncsm won’t be chatting in March, there are other active cancer chats - often covering topics beyond their specific cancer. Plus many great overall healthcare chats. Check out our round-up and hope you’ll check them out: https://t.co/wYqfAZSAla |
| Christina Lizaso @btrfly12 RT @CMAnnunziata: T6: T6: consider the phase of the trial (1,2,3), whether it is randomized (some get experimental drug, some get standard care), and whether it is specifically designed for your particular type of cancer (biomarker, histology, gene mutation, etc) #gyncsm |
| Dee Sparacio @womenofteal Grateful for our #gyncsm co-moderators! @btrfly12 @ShannonWestin @temkins @journeycancer @DrBeckerSchutte #gyncsm |
| Dee Sparacio @womenofteal Remember to check https://t.co/Df2f7Okp35 for a transcript of the chat and resources #gyncsm |
| Ovarian Cancer Proj @WNYOCP @CMAnnunziata The Goddess Team Dr. Elise Kohn, Dr. Christina Annunziata, Dr. Jung Min Lee @theNCI #ovariancancer Dream Team!! Hello from @KathleenMaxian #gyncsm Thank you for your dedication to our women |
| Tobey @BRCAinfo RT @gyncsm: Note - There will be no #gyncsm chat in March. Save the Date! On Wed April 10, 2019 at 9pmET guest @ronny_drapkin will join us to discuss his research on where and how high-grade serous ovarian cancer starts. #gyncsm |
| Shannon Westin, MD, MPH, FASCO @ShannonWestin Thank you for a great chat!! Hope to see you at #SGOMtg in Hawaii! #gyncsm |
| Robin Martinez @RobinSmrtPtient Join https://t.co/WC18aFzajs to talk at greater length with members 24/7 #gyncsm |
| Christina Lizaso @btrfly12 RT @ClearityFnd: T6: T6: "We want to make it easy to find these results so that women don't have to spend hours trying to find the right information to help them make informed choices about treatment options.” – Clearity’s Scientific Director, Dr. Deb Zajchowski (2/2) #gyncsm |
| Tanya Temkin @tanyaltee TIL: resources on what questions to ask. I want to bring this info to the Gyn Oncology department at the place where I get my care. #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm As always, remember to tweet things of interest with hashtag #gyncsm to keep the conversation going between chats. |
| Dee Sparacio @womenofteal Thank you @CMAnnunziata , @aaronjun_ @ClearityFnd @Clara_Health @LillyTrials @smart_patients for sharing your expertise and information with us #gyncsm |
| Dee Sparacio @womenofteal RT @gyncsm: As always, remember to tweet things of interest with hashtag #gyncsm to keep the conversation going between chats. |
| Tobey @BRCAinfo Goodnight, stay well & thank you as always 🙏 #gyncsm |
| Ann Becker-Schutte @DrBeckerSchutte RT @gyncsm: While #gyncsm won’t be chatting in March, there are other active cancer chats - often covering topics beyond their specific cancer. Plus many great overall healthcare chats. Check out our round-up and hope you’ll check them out: https://t.co/wYqfAZSAla |
| Ann Becker-Schutte @DrBeckerSchutte RT @womenofteal: TIL that there is still so much information and advice to share within our community about clinical trials. #gyncsm |
| Dee Sparacio @womenofteal RT @WNYOCP: @CMAnnunziata The Goddess Team Dr. Elise Kohn, Dr. Christina Annunziata, Dr. Jung Min Lee @theNCI #ovariancancer Dream Team!! Hello from @KathleenMaxian #gyncsm Thank you for your dedication to our women |
| Ann Becker-Schutte @DrBeckerSchutte RT @gyncsm: As always, remember to tweet things of interest with hashtag #gyncsm to keep the conversation going between chats. |
| GYN Cancer | #GYNCSM @gyncsm Thanks to all our topic experts for joining along and sharing your resources and thanks to everyone who shared their experiences. #gyncsm |
| Dee Sparacio @womenofteal There will be no #gyncsm chat in March. Save the Date! On Wed April 10, 2019 at 9pmET https://t.co/DfmipvReIT |
| Lilly Trials @LillyTrials Thanks for the great discussion #gyncsm community! We wanted to leave you with this closing thought—a decorated brick submitted to us by a member of the clinical research community. https://t.co/xu0KTeXJg6 |
| Dee Sparacio @womenofteal RT @gyncsm: Thanks to all our topic experts for joining along and sharing your resources and thanks to everyone who shared their experiences. #gyncsm |
| Tanya Temkin @tanyaltee Thanks to all! I’m thinking strategically about my future care and will now be better prepared if I consider a clinical trial in my future! #gyncsm |
| Dee Sparacio @womenofteal RT @LillyTrials: Thanks for the great discussion #gyncsm community! We wanted to leave you with this closing thought—a decorated brick submitted to us by a member of the clinical research community. https://t.co/xu0KTeXJg6 |
| Christina Lizaso @btrfly12 @tanyaltee Thanks for all you do to share and spread knowledge you gain to gyn patients! #gyncsm |
| Clearity Foundation @ClearityFnd Knowing what trials are available is an important part of making the most informed decisions. Clearity is here to help you with any questions you might have! Give us a call at (858) 657-0282 to discuss the most promising treatment options for your unique situation. #gyncsm |
| Dee Sparacio @womenofteal Remember the #gyncsm community is here if you should have questions about gyn clinical trials or research studies you might read about. #gyncsm |
| Dee Sparacio @womenofteal RT @ClearityFnd: Knowing what trials are available is an important part of making the most informed decisions. Clearity is here to help you with any questions you might have! Give us a call at (858) 657-0282 to discuss the most promising treatment options for your unique situation. #gyncsm |
| Lilly Trials @LillyTrials @gyncsm Thanks so much! Can't wait to read. #gyncsm |
| Dee Sparacio @womenofteal Thank you to everyone who shared their insights into how to find a clinical trial ! I love this Community. #gyncsm |
| Christina Lizaso @btrfly12 Trial Basics - Understanding clinical trials video via Foundation for Women’s Cancer @GYNCancer #gyncsm https://t.co/3t7HbQB31n |
| Dee Sparacio @womenofteal RT @btrfly12: Trial Basics - Understanding clinical trials video via Foundation for Women’s Cancer @GYNCancer #gyncsm https://t.co/3t7HbQB31n |
| Dee Sparacio @womenofteal So much amazing information shared tonight it will be difficult to pull out the best Tweets to share on our blog. But don't worry a link to the Full transcript will be available too. #gyncsm |
| Dee Sparacio @womenofteal Resource: @CancerTodayMag Tomorrows Trials https://t.co/xpCxw99tZt #gyncsm |
| Christina Annunziata @CMAnnunziata @WNYOCP @theNCI @KathleenMaxian You are our inspiration! We @NCICCR_WMB @NCIResearchCtr will continue to do our best to help women with #gyncancer #gyncsm |
| Dee Sparacio @womenofteal @cure_magazine Clinical Trial Exclusions https://t.co/t3dLp1lZOz #gyncsm |
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