#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 for gynecologic cancer survivors, caregivers, advocates and health care providers. |
| GYN Cancer | #GYNCSM @gyncsm Our co-moderators are @womenofteal @btrfly12 Our health care moderators are @ShannonWestin @temkins @journeycancer and our mental health moderator @DrBeckerSchutte We start out with brief intro’s - Please take a moment to introduce yourself. #gyncsm |
 | Dee Sparacio @womenofteal RT @ShereeseMayMba: Come join us for #gyncsm, starting right now on Twitter. #cancerawareness #sexualhealthawareness https://t.co/ZXeQBVXZQi |
| Dee Sparacio @womenofteal RT @gyncsm: Welcome to #gyncsm - a passionate community for gynecologic cancer survivors, caregivers, advocates and health care providers. |
 | Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba Come join us for a chat, starting right now on Twitter. - - - #gyncsm #cancerawareness #sexualhealthawareness #GynecologicCancerAwarenessMonth #gynCa #gynecologiccancer #WomensHealth https://t.co/O4GbV1ZHnF https://t.co/C9racy0nuR |
| Dee Sparacio @womenofteal RT @gyncsm: Our co-moderators are @womenofteal @btrfly12 Our health care moderators are @ShannonWestin @temkins @journeycancer and our mental health moderator @DrBeckerSchutte We start out with brief intro’s - Please take a moment to introduce yourself. #gyncsm |
 | Christina Lizaso @btrfly12 Christina Lizaso – passionate re: community engagement and cancer care. I’ll be moderating as @gyncsm today. #gyncsm |
| Dee Sparacio @womenofteal Dee here! Dx with #ovca Stage3B 2005, recurrence 2008, Ovarian Cancer research advocate, blogger, & co-moderator #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm If you prefer to “listen only” during the chat, we'd love for you to tweet "#gyncsm" when you join - just to let us know you are here. Please continue intro's and welcomes - we'll start in w/ the "ground rules" :) and tips! |
| Dee Sparacio @womenofteal RT @gyncsm: If you prefer to “listen only” during the chat, we'd love for you to tweet "#gyncsm" when you join - just to let us know you are here. Please continue intro's and welcomes - we'll start in w/ the "ground rules" :) and tips! |
| GYN Cancer | #GYNCSM @gyncsm The #gyncsm chat promotes community in a public forum. Chats are an open discussion and all are welcome to share from their experiences and perspectives. Learn more about risks/benefits: https://t.co/TipZUv1jQy |
| Dee Sparacio @womenofteal @ShereeseMayMba Hi Shereese so glad you can join us tonight! #gyncsm #GCAM |
| GYN Cancer | #GYNCSM @gyncsm #gyncsm is not a forum for individual medical advice. Resources and referrals and provided solely for information and convenience. |
| Dee Sparacio @womenofteal RT @gyncsm: The #gyncsm chat promotes community in a public forum. Chats are an open discussion and all are welcome to share from their experiences and perspectives. Learn more about risks/benefits: https://t.co/TipZUv1jQy |
| Dee Sparacio @womenofteal RT @gyncsm: #gyncsm is not a forum for individual medical advice. Resources and referrals and provided solely for information and convenience. |
| Dee Sparacio @womenofteal #gyncsm tagged resources and referrals are not a substitute for speaking with your doctor who understands your needs and history. |
| GYN Cancer | #GYNCSM @gyncsm Are you new to tweet chats? Follow hashtag #gyncsm under Explore - Latest and include the hashtag in every tweet during the next hour to engage with others about this topic. You may need to refresh to see new tweets as they are added. |
| Dee Sparacio @womenofteal RT @gyncsm: Are you new to tweet chats? Follow hashtag #gyncsm under Explore - Latest and include the hashtag in every tweet during the next hour to engage with others about this topic. You may need to refresh to see new tweets as they are added. |
| Dee Sparacio @womenofteal Remember - Twitter is an open social network and posts are public. Use a Direct Message to exchange email addresses/personal information. #gyncsm |
 | Jillosopher, BSN, RN @jillosopher Evening #gyncsm I’m 5 years out of treatment for stage 3a endometrial ca. I’m mostly going to listen tonight |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba RT @womenofteal: #gyncsm tagged resources and referrals are not a substitute for speaking with your doctor who understands your needs and history. |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba RT @btrfly12: Christina Lizaso – passionate re: Christina Lizaso – passionate re: community engagement and cancer care. I’ll be moderating as @gyncsm today. #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm We welcome all those joining in as well as those here to “listen in”. We'd love you to tweet #gyncsm so we know you are here and you can always tweet, DM or email us with questions/comments after the chat is over if you like. See our blog for info: https://t.co/nDbbZmWQI7 |
| Dee Sparacio @womenofteal @jillosopher Hi Jill So happy you are able to join us. #gyncsm |
| Dee Sparacio @womenofteal RT @gyncsm: We welcome all those joining in as well as those here to “listen in”. We'd love you to tweet #gyncsm so we know you are here and you can always tweet, DM or email us with questions/comments after the chat is over if you like. See our blog for info: https://t.co/nDbbZmWQI7 |
| Dee Sparacio @womenofteal Thank you to all who have tweeted valuable information to our community during the past month using the #gyncsm hashtag and those who helped promote tonight's chat. |
| GYN Cancer | #GYNCSM @gyncsm With today's chat #gyncsm is celebrating our 9th anniversary and our 96th chat! Thanks so much to all our participants and supporters. https://t.co/vYft7NJrIp |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba RT @gyncsm: We welcome all those joining in as well as those here to “listen in”. We'd love you to tweet #gyncsm so we know you are here and you can always tweet, DM or email us with questions/comments after the chat is over if you like. See our blog for info: https://t.co/nDbbZmWQI7 |
| GYN Cancer | #GYNCSM @gyncsm Tonight on #gyncsm we’ll be discussing Clinical Trials: When, How and For Whom. Every few years we've held a chat on this topic and there always seems to be more to discuss. You can find the 7 Topic Questions we’ll cover on today’s chat on our blog: https://t.co/xtmmfwdw53 |
| Dee Sparacio @womenofteal RT @gyncsm: With today's chat #gyncsm is celebrating our 9th anniversary and our 96th chat! Thanks so much to all our participants and supporters. https://t.co/vYft7NJrIp |
| Dee Sparacio @womenofteal RT @gyncsm: Tonight on #gyncsm we’ll be discussing Clinical Trials: Tonight on #gyncsm we’ll be discussing Clinical Trials: When, How and For Whom. Every few years we've held a chat on this topic and there always seems to be more to discuss. You can find the 7 Topic Questions we’ll cover on today’s chat on our blog: https://t.co/xtmmfwdw53 |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba Hi all. I'm Shereese from Maryland. #gyncsm https://t.co/Pr8lO6xY0W |
| Christina Lizaso @btrfly12 RT @gyncsm: With today's chat #gyncsm is celebrating our 9th anniversary and our 96th chat! Thanks so much to all our participants and supporters. https://t.co/vYft7NJrIp |
| Christina Lizaso @btrfly12 RT @gyncsm: Tonight on #gyncsm we’ll be discussing Clinical Trials: Tonight on #gyncsm we’ll be discussing Clinical Trials: When, How and For Whom. Every few years we've held a chat on this topic and there always seems to be more to discuss. You can find the 7 Topic Questions we’ll cover on today’s chat on our blog: https://t.co/xtmmfwdw53 |
| GYN Cancer | #GYNCSM @gyncsm We’ll use a Topic format with T1:; T2: etc. Please include the corresponding T#: at the front of your comment or answer. We will also end our chat with a chance to share TIL: thoughts standing for “Today I Learned”. #gyncsm |
| Dee Sparacio @womenofteal RT @gyncsm: We’ll use a Topic format with T1:; T2: etc. Please include the corresponding T#: We’ll use a Topic format with T1:; T2: etc. Please include the corresponding T#: at the front of your comment or answer. We will also end our chat with a chance to share TIL: thoughts standing for “Today I Learned”. #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm T1: What are some basic facts and key points about clinical trials that people should be aware of? #gyncsm |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba #gyncsm https://t.co/ZxgS6JqgYY |
| Dee Sparacio @womenofteal RT @gyncsm: T1: T1: What are some basic facts and key points about clinical trials that people should be aware of? #gyncsm |
| Christina Lizaso @btrfly12 RT @gyncsm: T1: T1: What are some basic facts and key points about clinical trials that people should be aware of? #gyncsm |
| Dee Sparacio @womenofteal @gyncsm T1 Participating in a #clinicaltrial is voluntary! #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm T1: We shared in the #gyncsm blog post about this chat an infographic covering about the phases and types of trials. There are lots of great resources out there even if you are just starting out. https://t.co/xtmmfwdw53 |
| Dee Sparacio @womenofteal RT @gyncsm: T1: T1: We shared in the #gyncsm blog post about this chat an infographic covering about the phases and types of trials. There are lots of great resources out there even if you are just starting out. https://t.co/xtmmfwdw53 |
| Dee Sparacio @womenofteal T1 I usually think of #clinicaltrial for treatment but there are some for prevention, screening , QOL, devices - including apps #gyncsm |
| Christina Lizaso @btrfly12 T1: Yes, and also you *always* have the right to say no and leave a trial. #gyncsm |
| Christina Lizaso @btrfly12 RT @womenofteal: T1 I usually think of #clinicaltrial for treatment but there are some for prevention, screening , QOL, devices - including apps #gyncsm |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba T11 Women of color are underrepresented in clinical trials . https://t.co/2CPTPrRm31 #gyncsm |
 | Idalid "Ivy" Franco MD MPH @IvyRadOncMD Ivy Franco - Radiation oncologist passionate about patient advocacy, empowerment, and partnership, health equity researcher #gyncsm |
| Dee Sparacio @womenofteal RT @btrfly12: T1: T1: Yes, and also you *always* have the right to say no and leave a trial. #gyncsm |
| Dee Sparacio @womenofteal RT @ShereeseMayMba: T11 Women of color are underrepresented in clinical trials . https://t.co/2CPTPrRm31 #gyncsm |
| Christina Lizaso @btrfly12 T1: A lot of trials in the cancer space are testing new treatment vs. current treatment. So participating does not put you at risk for no treatment or less treatment. In fact, you often are super well monitored whether standard or cutting edge #gyncsm |
| Dee Sparacio @womenofteal @IvyRadOncMD Thanks for joining us tonight! #gyncsm |
| Christina Lizaso @btrfly12 RT @ShereeseMayMba: T11 Women of color are underrepresented in clinical trials . https://t.co/2CPTPrRm31 #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm T2: When should a clinical trial be considered? Does a patient need to bring up their interest in participating in a trial? #gyncsm |
| Christina Lizaso @btrfly12 RT @gyncsm: T2: T2: When should a clinical trial be considered? Does a patient need to bring up their interest in participating in a trial? #gyncsm |
| Dee Sparacio @womenofteal @ShereeseMayMba Thanks for sharing. #gyncsm |
| Dee Sparacio @womenofteal RT @btrfly12: T1: T1: A lot of trials in the cancer space are testing new treatment vs. current treatment. So participating does not put you at risk for no treatment or less treatment. In fact, you often are super well monitored whether standard or cutting edge #gyncsm |
| Christina Lizaso @btrfly12 T2: Trials are NOT just a last resort. Trials can be for any part of your cancer experience - even risk reduction pre diagnosis, for nutrition, long-term survival, etc. Any time is a good time to participate! #gyncsm |
| Dee Sparacio @womenofteal T1 #clinicaltrials have 3 phases Phase 1 – small group of patients test for safety and side effect; Phase 2 how well does treatment work Phase 3 large group of patients confirm how well treatment works, side effects, compare to other treatments #gyncsm |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba T2 While patients shouldn't always have to start the conversation, they probably should. There are resources to help patients broach the conversation with their doctors. #gyncsm |
| Dee Sparacio @womenofteal RT @gyncsm: T2: T2: When should a clinical trial be considered? Does a patient need to bring up their interest in participating in a trial? #gyncsm |
 | Christine (Cissy) White @healWRITEnow @gyncsm What an amazing milestone! Congrats and I'm grateful for this community! #gyncsm @gyncsm |
| Dee Sparacio @womenofteal RT @btrfly12: T2: T2: Trials are NOT just a last resort. Trials can be for any part of your cancer experience - even risk reduction pre diagnosis, for nutrition, long-term survival, etc. Any time is a good time to participate! #gyncsm |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba RT @womenofteal: T1 #clinicaltrials have 3 phases Phase 1 – small group of patients test for safety and side effect; Phase 2 how well does treatment work Phase 3 large group of patients confirm how well treatment works, side effects, compare to other treatments #gyncsm |
| Dee Sparacio @womenofteal RT @ShereeseMayMba: T2 While patients shouldn't always have to start the conversation, they probably should. There are resources to help patients broach the conversation with their doctors. #gyncsm |
| Idalid "Ivy" Franco MD MPH @IvyRadOncMD T1 Yes. There are many different types of clinical trials and can be targeted to different populations and needs. It is important to ask your doctor what clinical trials are ongoing so that you can decide if any are right for you. |
| Christina Lizaso @btrfly12 T2: Not all doctors and practices regularly bring up trials. I also hear that a few mainly suggest trials in their own healthcare system. Patients need to be proactive and ask if they are interested. Everyone has the right to know what is out there and discuss options. #gyncsm |
| Christina Lizaso @btrfly12 RT @ShereeseMayMba: T2 While patients shouldn't always have to start the conversation, they probably should. There are resources to help patients broach the conversation with their doctors. #gyncsm |
| Jillosopher, BSN, RN @jillosopher RT @ShereeseMayMba: T11 Women of color are underrepresented in clinical trials . https://t.co/2CPTPrRm31 #gyncsm |
| Christina Lizaso @btrfly12 RT @womenofteal: T1 #clinicaltrials have 3 phases Phase 1 – small group of patients test for safety and side effect; Phase 2 how well does treatment work Phase 3 large group of patients confirm how well treatment works, side effects, compare to other treatments #gyncsm |
| Dee Sparacio @womenofteal T2 A patient bringing up an interest in a trial is a patient who is advocating for themselves. #gyncsm |
| Dee Sparacio @womenofteal RT @btrfly12: T2: T2: Not all doctors and practices regularly bring up trials. I also hear that a few mainly suggest trials in their own healthcare system. Patients need to be proactive and ask if they are interested. Everyone has the right to know what is out there and discuss options. #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm T3: Before starting their clinical trial search, what information do patients need? What is helpful to consider/decide ahead of time? #gyncsm |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba RT @womenofteal: T2 A patient bringing up an interest in a trial is a patient who is advocating for themselves. #gyncsm |
| Christine (Cissy) White @healWRITEnow @gyncsm T2: It's great to learn about what clinical trial options are available at any phase of life/treatment. I used to think trials were just when there's no standard of care. I didn't realize we can research them on our own as well as through providers/hospitals. #gyncsm @gyncsm |
| Christina Lizaso @btrfly12 RT @healWRITEnow: @gyncsm T2: @gyncsm T2: It's great to learn about what clinical trial options are available at any phase of life/treatment. I used to think trials were just when there's no standard of care. I didn't realize we can research them on our own as well as through providers/hospitals. #gyncsm @gyncsm |
| Christina Lizaso @btrfly12 RT @gyncsm: T3: T3: Before starting their clinical trial search, what information do patients need? What is helpful to consider/decide ahead of time? #gyncsm |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba RT @gyncsm: T3: T3: Before starting their clinical trial search, what information do patients need? What is helpful to consider/decide ahead of time? #gyncsm |
| Dee Sparacio @womenofteal RT @healWRITEnow: @gyncsm T2: @gyncsm T2: It's great to learn about what clinical trial options are available at any phase of life/treatment. I used to think trials were just when there's no standard of care. I didn't realize we can research them on our own as well as through providers/hospitals. #gyncsm @gyncsm |
| Dee Sparacio @womenofteal RT @gyncsm: T3: T3: Before starting their clinical trial search, what information do patients need? What is helpful to consider/decide ahead of time? #gyncsm |
| Christine (Cissy) White @healWRITEnow @gyncsm T2:#gyncsm @gyncsm It also depends where you are at. Sometimes it feels strange being heavily recruited into a trial with a new cancer diagnosis. Other times it feels hard to find a trial one qualifies for even when willing. Varies depending where patient is at. |
| Christina Lizaso @btrfly12 T1: Resources on Clinical Trials #gyncsm @GYNcancer Clinical trial basics https://t.co/md6YUafbEu @GYNcancer Understanding Gyn Clinical trials https://t.co/uRrAWKd1S7 @SGO_org Gyn trials what it means for you video https://t.co/B19aohI1hW |
| Idalid "Ivy" Franco MD MPH @IvyRadOncMD T2: This is very true. You should also feel empowered to ask questions and bring up trials to see if you might be eligible at any phase of your care #gyncsm |
| Dee Sparacio @womenofteal RT @btrfly12: T1: T1: Resources on Clinical Trials #gyncsm @GYNcancer Clinical trial basics https://t.co/md6YUafbEu @GYNcancer Understanding Gyn Clinical trials https://t.co/uRrAWKd1S7 @SGO_org Gyn trials what it means for you video https://t.co/B19aohI1hW |
| Dee Sparacio @womenofteal RT @healWRITEnow: @gyncsm T2:#gyncsm @gyncsm It also depends where you are at. Sometimes it feels strange being heavily recruited into a trial with a new cancer diagnosis. Other times it feels hard to find a trial one qualifies for even when willing. Varies depending where patient is at. |
| Christine (Cissy) White @healWRITEnow @gyncsm T3: #gyncsm @gyncsm It's good to know where the trial is located, how time & appt. intensive it is, how risky of course, & if expenses/costs will be covered. Also, it's VERY important to know if it's blinded or unblinded, & the phase & what those things mean. |
| Christina Lizaso @btrfly12 T3: Patients need access to their records... which isn't always the easiest. Patients should decide if they are willing/able to travel for a trial. Patients should think about their own goals/motives in participating to guide decisions and be clear with healthcare team #gyncsm |
| Dee Sparacio @womenofteal @gyncsm T3 Patients should know their type / subtype, stage, if they have been tested any genetic mutations. Consider how far you are willing to travel. #gyncsm |
| Christina Lizaso @btrfly12 RT @healWRITEnow: @gyncsm T3: @gyncsm T3: #gyncsm @gyncsm It's good to know where the trial is located, how time & appt. intensive it is, how risky of course, & if expenses/costs will be covered. Also, it's VERY important to know if it's blinded or unblinded, & the phase & what those things mean. |
| Dee Sparacio @womenofteal RT @IvyRadOncMD: T2: T2: This is very true. You should also feel empowered to ask questions and bring up trials to see if you might be eligible at any phase of your care #gyncsm |
| Dee Sparacio @womenofteal RT @healWRITEnow: @gyncsm T3: @gyncsm T3: #gyncsm @gyncsm It's good to know where the trial is located, how time & appt. intensive it is, how risky of course, & if expenses/costs will be covered. Also, it's VERY important to know if it's blinded or unblinded, & the phase & what those things mean. |
| Christina Lizaso @btrfly12 @healWRITEnow @gyncsm #gyncsm Clinical Trial Jargon Busting Guide from @power4patients: https://t.co/tT1JMMzu6Z |
| Dee Sparacio @womenofteal Excellent point about being able to share your records with the trial site if it is not your own. #gyncsm |
| Christina Lizaso @btrfly12 RT @womenofteal: @gyncsm T3 Patients should know their type / subtype, stage, if they have been tested any genetic mutations. Consider how far you are willing to travel. #gyncsm |
| Christina Lizaso @btrfly12 RT @IvyRadOncMD: T2: T2: This is very true. You should also feel empowered to ask questions and bring up trials to see if you might be eligible at any phase of your care #gyncsm |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba T3 It's a good idea to know why you'e considering a clinical trial before trying to pick one. @nih has a great website resouce. https://t.co/zaSm9l79Mo #gyncsm |
| Dee Sparacio @womenofteal RT @ShereeseMayMba: T3 It's a good idea to know why you'e considering a clinical trial before trying to pick one. @nih has a great website resouce. https://t.co/zaSm9l79Mo #gyncsm |
| Dee Sparacio @womenofteal RT @btrfly12: @healWRITEnow @gyncsm #gyncsm Clinical Trial Jargon Busting Guide from @power4patients: @healWRITEnow @gyncsm #gyncsm Clinical Trial Jargon Busting Guide from @power4patients: https://t.co/tT1JMMzu6Z |
| GYN Cancer | #GYNCSM @gyncsm T4: How can patients search for trials? What keywords are helpful? Are there specific search sites for gyn cancers? #gyncsm |
| Dee Sparacio @womenofteal T3 This @theNCI site offers questions you should ask re-safety etc https://t.co/SwghjNYYCy #gyncsm |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba T4 Same answer. Go to https://t.co/zaSm9l6BWQ There's just so much info, and you can input the type of trial you want. #gyncsm |
| Dee Sparacio @womenofteal RT @gyncsm: T4: T4: How can patients search for trials? What keywords are helpful? Are there specific search sites for gyn cancers? #gyncsm |
| Christina Lizaso @btrfly12 T4: For ovarian cancer, @ClearityFnd has some great #ClinicalTrial resources https://t.co/Za9MpFJ1r5 as well as a Treatment Decision Support program. #gyncsm |
| Christina Lizaso @btrfly12 RT @gyncsm: T4: T4: How can patients search for trials? What keywords are helpful? Are there specific search sites for gyn cancers? #gyncsm |
| Idalid "Ivy" Franco MD MPH @IvyRadOncMD @gyncsm T3: A great resource is https://t.co/qZ9xAQozWF which provides a starting point of available trials. You can take this information to your doctor & have a more in depth discussion of what eligibility criteria and requirements are needed for a particular trial. #gyncsm |
| Christina Lizaso @btrfly12 T4: A good problem is more and more trials for gynecologic cancers but it is a challenge to sift through things. Many cancer advocates are able to help steer you in the right direction if you get overwhelmed. There is help. #gyncsm |
| Dee Sparacio @womenofteal T4 this @theNCI site talks about how to search for trials . There is a chat feature on the site too! https://t.co/KzfxYFQQF9 #gyncsm |
| Christina Lizaso @btrfly12 RT @womenofteal: T4 this @theNCI site talks about how to search for trials . There is a chat feature on the site too! https://t.co/KzfxYFQQF9 #gyncsm |
 | John Novack @J2Novack RT @gyncsm: T4: T4: How can patients search for trials? What keywords are helpful? Are there specific search sites for gyn cancers? #gyncsm |
| Dee Sparacio @womenofteal RT @ShereeseMayMba: T4 Same answer. Go to https://t.co/zaSm9l6BWQ There's just so much info, and you can input the type of trial you want. #gyncsm |
| Christina Lizaso @btrfly12 RT @IvyRadOncMD: @gyncsm T3: @gyncsm T3: A great resource is https://t.co/qZ9xAQozWF which provides a starting point of available trials. You can take this information to your doctor & have a more in depth discussion of what eligibility criteria and requirements are needed for a particular trial. #gyncsm |
| Dee Sparacio @womenofteal RT @btrfly12: T4: T4: For ovarian cancer, @ClearityFnd has some great #ClinicalTrial resources https://t.co/Za9MpFJ1r5 as well as a Treatment Decision Support program. #gyncsm |
| Dee Sparacio @womenofteal RT @IvyRadOncMD: @gyncsm T3: @gyncsm T3: A great resource is https://t.co/qZ9xAQozWF which provides a starting point of available trials. You can take this information to your doctor & have a more in depth discussion of what eligibility criteria and requirements are needed for a particular trial. #gyncsm |
 | Shawn S Smith @ShawnSS65 RT @ShereeseMayMba: T11 Women of color are underrepresented in clinical trials . https://t.co/2CPTPrRm31 #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm T5: Who is a “good candidate” for a trial? What is a study protocol? Where can patients get help on the terminology used like informed consent, eligibility, exclusion criteria, etc.? #gyncsm |
| Dee Sparacio @womenofteal T4 @OCRAhope has a search engine for finding trials https://t.co/pxnv6PmIPR #gyncsm |
| Dee Sparacio @womenofteal RT @btrfly12: T4: T4: A good problem is more and more trials for gynecologic cancers but it is a challenge to sift through things. Many cancer advocates are able to help steer you in the right direction if you get overwhelmed. There is help. #gyncsm |
| Dee Sparacio @womenofteal RT @gyncsm: T5: T5: Who is a “good candidate” for a trial? What is a study protocol? Where can patients get help on the terminology used like informed consent, eligibility, exclusion criteria, etc.? #gyncsm |
| Christina Lizaso @btrfly12 T5: @CancerDotNet is a great starting point for many cancer-related topics. Here's their resources page for learning about Clinical Trials and how you might get involved https://t.co/UYJ7l28Pma #gyncsm |
| Christina Lizaso @btrfly12 RT @gyncsm: T5: T5: Who is a “good candidate” for a trial? What is a study protocol? Where can patients get help on the terminology used like informed consent, eligibility, exclusion criteria, etc.? #gyncsm |
| Dee Sparacio @womenofteal RT @btrfly12: T5: T5: @CancerDotNet is a great starting point for many cancer-related topics. Here's their resources page for learning about Clinical Trials and how you might get involved https://t.co/UYJ7l28Pma #gyncsm |
| Dee Sparacio @womenofteal @gyncsm T5 In my opinion - Everyone at could be a "Candidate" . Researching whether or not you qualify would be found in the inclusion characteristics section of the #Clinicaltrial 's protocol. #gyncsm |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba RT @womenofteal: @gyncsm T5 In my opinion - Everyone at could be a "Candidate" . Researching whether or not you qualify would be found in the inclusion characteristics section of the #Clinicaltrial 's protocol. #gyncsm |
| Idalid "Ivy" Franco MD MPH @IvyRadOncMD T5: This depends on the specific trial. All trials have different requirements and not meeting the requirements for one does not mean not meeting the requirements for all. #gyncsm |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba RT @gyncsm: T5: T5: Who is a “good candidate” for a trial? What is a study protocol? Where can patients get help on the terminology used like informed consent, eligibility, exclusion criteria, etc.? #gyncsm |
| Dee Sparacio @womenofteal RT @IvyRadOncMD: T5: T5: This depends on the specific trial. All trials have different requirements and not meeting the requirements for one does not mean not meeting the requirements for all. #gyncsm |
| Dee Sparacio @womenofteal T5 to understand what you need to know about eligibility check out this from @americancancer https://t.co/mwTM8bmXpO #gyncsm |
| Christina Lizaso @btrfly12 T5: Trials do have "rules" about who can participate. which are in place to make sure the research can answer the questions it is trying to. In recent years, more attn is being paid to making sure these rules are needed for each trial and are not serving as barriers. #gyncsm |
| Christina Lizaso @btrfly12 RT @IvyRadOncMD: T5: T5: This depends on the specific trial. All trials have different requirements and not meeting the requirements for one does not mean not meeting the requirements for all. #gyncsm |
| Christine (Cissy) White @healWRITEnow @gyncsm T5: #gyncsm @gyncsm Wish the criteria was more for patient benefit than to make the drug results look good or who can afford to participate. Anyhow who wants to be on a trial is "good candidate" & they should reflect actual patient population but don't. Work to be done. |
| Christina Lizaso @btrfly12 RT @womenofteal: @gyncsm T5 In my opinion - Everyone at could be a "Candidate" . Researching whether or not you qualify would be found in the inclusion characteristics section of the #Clinicaltrial 's protocol. #gyncsm |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba RT @btrfly12: T5: T5: Trials do have "rules" about who can participate. which are in place to make sure the research can answer the questions it is trying to. In recent years, more attn is being paid to making sure these rules are needed for each trial and are not serving as barriers. #gyncsm |
| Christina Lizaso @btrfly12 RT @healWRITEnow: @gyncsm T5: @gyncsm T5: #gyncsm @gyncsm Wish the criteria was more for patient benefit than to make the drug results look good or who can afford to participate. Anyhow who wants to be on a trial is "good candidate" & they should reflect actual patient population but don't. Work to be done. |
| Dee Sparacio @womenofteal RT @btrfly12: T5: T5: Trials do have "rules" about who can participate. which are in place to make sure the research can answer the questions it is trying to. In recent years, more attn is being paid to making sure these rules are needed for each trial and are not serving as barriers. #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm T6: What questions are important to ask when contacting the study team? What factors should be considered? #gyncsm |
| Christina Lizaso @btrfly12 RT @gyncsm: T6: T6: What questions are important to ask when contacting the study team? What factors should be considered? #gyncsm |
| Dee Sparacio @womenofteal RT @healWRITEnow: @gyncsm T5: @gyncsm T5: #gyncsm @gyncsm Wish the criteria was more for patient benefit than to make the drug results look good or who can afford to participate. Anyhow who wants to be on a trial is "good candidate" & they should reflect actual patient population but don't. Work to be done. |
| Idalid "Ivy" Franco MD MPH @IvyRadOncMD T5: This is a great point! Health equity researchers and advocates are also looking carefully to see if the trial requirements are keeping certain populations out of trial participation and working to build more inclusive language #gyncsm |
| Dee Sparacio @womenofteal T5 Here is another good page from the @theNCI site on informed consent. https://t.co/n2fy078tBX #gyncsm |
| Dee Sparacio @womenofteal RT @gyncsm: T6: T6: What questions are important to ask when contacting the study team? What factors should be considered? #gyncsm |
| Christina Lizaso @btrfly12 T6: Your doctor may act as a liaison, but you can reach out to the study team directly w/ questions or concerns or just to get more information. Some study teams are better at marketing and communication than others... so patience is another tool when it comes to trials. #gyncsm |
| Dee Sparacio @womenofteal RT @IvyRadOncMD: T5: T5: This is a great point! Health equity researchers and advocates are also looking carefully to see if the trial requirements are keeping certain populations out of trial participation and working to build more inclusive language #gyncsm |
| Christina Lizaso @btrfly12 RT @IvyRadOncMD: T5: T5: This is a great point! Health equity researchers and advocates are also looking carefully to see if the trial requirements are keeping certain populations out of trial participation and working to build more inclusive language #gyncsm |
| Christina Lizaso @btrfly12 #gyncsm @healWRITEnow: It can be overwhelming searching for a trial. It helps to have navigators to narrow down possible matches if at all possible. Patients also need to know we can look into trials outside our hospitals. I didn't always know that. |
| Christine (Cissy) White @healWRITEnow RT @IvyRadOncMD: T5: T5: This is a great point! Health equity researchers and advocates are also looking carefully to see if the trial requirements are keeping certain populations out of trial participation and working to build more inclusive language #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm T7: #gyncsm For those who have been involved in a #clinicaltrial: What phase trial was it? What benefits or drawbacks did you experience? If you have not participated in a clinical trial, what are some reasons you did not? |
| Dee Sparacio @womenofteal T6 : So many ? * # days you will be on site for testing or treatment( if a treatment trial) * types and # scans , blood tests * compensation for travel * how and who to report side effects if you have them? * how long is the trial? #gyncsm |
| Dee Sparacio @womenofteal RT @btrfly12: #gyncsm @healWRITEnow: It can be overwhelming searching for a trial. It helps to have navigators to narrow down possible matches if at all possible. Patients also need to know we can look into trials outside our hospitals. I didn't always know that. |
| Dee Sparacio @womenofteal RT @btrfly12: T6: T6: Your doctor may act as a liaison, but you can reach out to the study team directly w/ questions or concerns or just to get more information. Some study teams are better at marketing and communication than others... so patience is another tool when it comes to trials. #gyncsm |
| Dee Sparacio @womenofteal RT @gyncsm: T7: T7: #gyncsm For those who have been involved in a #clinicaltrial: What phase trial was it? What benefits or drawbacks did you experience? If you have not participated in a clinical trial, what are some reasons you did not? |
| Christine (Cissy) White @healWRITEnow @gyncsm t7: #gyncsm In maintenance phase, I was in blinded study. It was over 2 years ago & I still don't know if I got a Parp (or not) or Immuno (or not) which would have bene helpful during recurrences. That's been a challenge for me (& medical team). (1) |
| Dee Sparacio @womenofteal T6 Answers should be in the consent but you can ask the investigators to confirm all information you have read. #gyncsm |
| Christine (Cissy) White @healWRITEnow @gyncsm T7: It can feel important to be in a trial, to maybe advance science even if one can't benefit personally. And, there are real risks with doses, drugs, & also that even in trials errors happen (medical, scheduling wise, etc. & it can be consequential). #gyncsm |
| Christina Lizaso @btrfly12 T7: I've enrolled in some CHEK2 patient registries and have completed interviews and do annual update surveys. I have interest in a trial for previvors but haven't made it a priority or seen one that I went ahead and jumped on. #gyncsm |
 | Matthew Katz, MD 🟦 @subatomicdoc RT @womenofteal: T6 : T6 : So many ? * # days you will be on site for testing or treatment( if a treatment trial) * types and # scans , blood tests * compensation for travel * how and who to report side effects if you have them? * how long is the trial? #gyncsm |
| Jillosopher, BSN, RN @jillosopher @gyncsm T7: I didn’t do a trial or think to ask. Knew I had cancer, found during hysterectomy, but thought to be early. Final path showed 3a. Chemo started one week after my surgery follow up. It was a blur #gyncsm |
| Dee Sparacio @womenofteal @healWRITEnow @gyncsm So it was blinded and even though you are not in the trial any longer they won't tell your Doc? #gyncsm |
| Matthew Katz, MD 🟦 @subatomicdoc RT @IvyRadOncMD: T5: T5: This is a great point! Health equity researchers and advocates are also looking carefully to see if the trial requirements are keeping certain populations out of trial participation and working to build more inclusive language #gyncsm |
| Dee Sparacio @womenofteal RT @jillosopher: @gyncsm T7: @gyncsm T7: I didn’t do a trial or think to ask. Knew I had cancer, found during hysterectomy, but thought to be early. Final path showed 3a. Chemo started one week after my surgery follow up. It was a blur #gyncsm |
| Christina Lizaso @btrfly12 T7: Anyone in the U.S. can participate in the NIH @AllofUsResearch project: https://t.co/egtmlhNh5y #gyncsm |
| Matthew Katz, MD 🟦 @subatomicdoc RT @btrfly12: T6: T6: Your doctor may act as a liaison, but you can reach out to the study team directly w/ questions or concerns or just to get more information. Some study teams are better at marketing and communication than others... so patience is another tool when it comes to trials. #gyncsm |
| Christine (Cissy) White @healWRITEnow @gyncsm T7: Covid had a few positives (i.e. allowing drugs to be mailed rather than 6-hr hospital visits to get drugs), & allowing local lab draws. Crisis showed that flexibility could work. But, also going to hospital, via public transportation to maybe get placebo? Complicated. #gyncsm |
| Dee Sparacio @womenofteal @gyncsm T7 I was in a ph 1 treatment trial on initial dx. I appreciated having a study nurse I could call with any ?'s I had. Drawback: Long treatment days - 12 hours #gyncsm |
| Matthew Katz, MD 🟦 @subatomicdoc Good evening! Matt Katz, radiation oncologist in MA/NH. Sorry to make it late for #gyncsm, saying 'hi' and looking over the thoughtful ideas shared by everyone. 🙂 |
| Christina Lizaso @btrfly12 T7: There are definitely risks and benefits to be weighed when deciding about a clinical trial. Know your own goals. Make up your own mind. It is okay whatever you decide with the info you have. #gyncsm |
| Matthew Katz, MD 🟦 @subatomicdoc RT @btrfly12: T7: T7: There are definitely risks and benefits to be weighed when deciding about a clinical trial. Know your own goals. Make up your own mind. It is okay whatever you decide with the info you have. #gyncsm |
| Christina Lizaso @btrfly12 RT @healWRITEnow: @gyncsm T7: @gyncsm T7: Covid had a few positives (i.e. allowing drugs to be mailed rather than 6-hr hospital visits to get drugs), & allowing local lab draws. Crisis showed that flexibility could work. But, also going to hospital, via public transportation to maybe get placebo? Complicated. #gyncsm |
| Dee Sparacio @womenofteal RT @btrfly12: T7: Anyone in the U.S. can participate in the NIH @AllofUsResearch project: T7: Anyone in the U.S. can participate in the NIH @AllofUsResearch project: https://t.co/egtmlhNh5y #gyncsm |
| Dee Sparacio @womenofteal RT @healWRITEnow: @gyncsm T7: @gyncsm T7: Covid had a few positives (i.e. allowing drugs to be mailed rather than 6-hr hospital visits to get drugs), & allowing local lab draws. Crisis showed that flexibility could work. But, also going to hospital, via public transportation to maybe get placebo? Complicated. #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm Already time for closing #gyncsm thoughts! We use the last few minutes of the chat to wrap up and share with each other what you learned or were reminded of during this chat. You can start your tweet with TIL: standing for “Today I Learned”. |
| Dee Sparacio @womenofteal @subatomicdoc Hi Matt, Great to "see you" . Hope you are doing well. #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm Thanks so much to everyone who listened along and those who shared resources and personal experiences. #gyncsm |
| Dee Sparacio @womenofteal Excellent advice. #gyncsm |
| Dee Sparacio @womenofteal RT @gyncsm: Thanks so much to everyone who listened along and those who shared resources and personal experiences. #gyncsm |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba RT @btrfly12: T7: T7: There are definitely risks and benefits to be weighed when deciding about a clinical trial. Know your own goals. Make up your own mind. It is okay whatever you decide with the info you have. #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm Note there will be no #gyncsm chat in October 2022. Save the date for our next chat on Wednesday, November 9, 8pmET when we’ll discuss Recurrence - reducing your risk and making treatment decisions. |
| Matthew Katz, MD 🟦 @subatomicdoc @womenofteal Hi Dee! Good to see you too :-D I'm well, getting back to post-summer norms and busy-ness. How are you? #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm As always, remember to tweet things of interest with hashtag #gyncsm to keep the conversation going between chats. Wishing wellness and safety for all. |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba Have a good remainder week, everyone. #gyncsm https://t.co/QZki5DRA7u |
| Idalid "Ivy" Franco MD MPH @IvyRadOncMD @jillosopher @gyncsm T7: There is so much information in such a short amount of time and decisions have to be made with incomplete data that can change from one day to the next based on imaging or biopsy. It is important to feel supported and empowered throughout #gyncsm |
| Matthew Katz, MD 🟦 @subatomicdoc @gyncsm Thanks so much! Have a great evening everyone #gyncsm |
| Dee Sparacio @womenofteal TIL There are lots of helpful resources and help with finding a trial if you are considering one. I wish that they were more readily available to those not close to a academic / research cancer center. #gyncsm |
| Christina Lizaso @btrfly12 RT @womenofteal: Growing Financial Burden From High-Cost Targeted Oral Anticancer Medicines Among Medicare Beneficiaries With Cancer https://t.co/ihPJ9YLVoE #gyncsm |
| Dee Sparacio @womenofteal RT @gyncsm: Note there will be no #gyncsm chat in October 2022. Save the date for our next chat on Wednesday, November 9, 8pmET when we’ll discuss Recurrence - reducing your risk and making treatment decisions. |
| Dee Sparacio @womenofteal RT @gyncsm: As always, remember to tweet things of interest with hashtag #gyncsm to keep the conversation going between chats. Wishing wellness and safety for all. |
| Dee Sparacio @womenofteal #gyncsm patient-survivors, caregivers, and advocates in the NYC area are invited to attend the Gynecologic Cancer Survivor-Caregiver Summit: Care Beyond the Cure on September 28. Further information may be found at https://t.co/3WN8VB22Uw |
| Dee Sparacio @womenofteal RT @IvyRadOncMD: @jillosopher @gyncsm T7: @jillosopher @gyncsm T7: There is so much information in such a short amount of time and decisions have to be made with incomplete data that can change from one day to the next based on imaging or biopsy. It is important to feel supported and empowered throughout #gyncsm |
| Christina Lizaso @btrfly12 TIL: There's always more to discuss with clinical trials. They are not the answer to everything. They are not always a last resort. They are complex but you can find comprehensive care when participating and can contribute to the body of knowledge. #gyncsm |
| Jillosopher, BSN, RN @jillosopher RT @womenofteal: #gyncsm patient-survivors, caregivers, and advocates in the NYC area are invited to attend the Gynecologic Cancer Survivor-Caregiver Summit: Care Beyond the Cure on September 28. Further information may be found at https://t.co/3WN8VB22Uw |
| Dee Sparacio @womenofteal Grateful for our #gyncsm co-moderators! @btrfly12 @ShannonWestin @temkins @journeycancer @DrBeckerSchutte Remember to check https://t.co/Df2f7OkWSD for a transcript of the chat and resources |
| Christina Lizaso @btrfly12 RT @IvyRadOncMD: @jillosopher @gyncsm T7: @jillosopher @gyncsm T7: There is so much information in such a short amount of time and decisions have to be made with incomplete data that can change from one day to the next based on imaging or biopsy. It is important to feel supported and empowered throughout #gyncsm |
| Jillosopher, BSN, RN @jillosopher Good night, all. #gyncsm |
| Christine (Cissy) White @healWRITEnow RT @womenofteal: TIL There are lots of helpful resources and help with finding a trial if you are considering one. I wish that they were more readily available to those not close to a academic / research cancer center. #gyncsm |
| GYN Cancer | #GYNCSM @gyncsm RT @womenofteal: Grateful for our #gyncsm co-moderators! @btrfly12 @ShannonWestin @temkins @journeycancer @DrBeckerSchutte Remember to check https://t.co/Df2f7OkWSD for a transcript of the chat and resources |
| Dee Sparacio @womenofteal It has been great working side-by-side on this chat with @btrfly12 these past 9 years. Thank you for keeping this chat running so smoothly. You're the Best! #gyncsm https://t.co/6AKjURlifV |
| Dee Sparacio @womenofteal RT @btrfly12: TIL: TIL: There's always more to discuss with clinical trials. They are not the answer to everything. They are not always a last resort. They are complex but you can find comprehensive care when participating and can contribute to the body of knowledge. #gyncsm |
| Dee Sparacio @womenofteal @jillosopher Goodnight Jill! #gyncsm |
| Jillosopher, BSN, RN @jillosopher @womenofteal @btrfly12 Thank you both for all you do #gyncsm |
| Idalid "Ivy" Franco MD MPH @IvyRadOncMD @gyncsm Thank you all for letting me be a part of this community tonight! #gyncsm |
| Christina Lizaso @btrfly12 @IvyRadOncMD @gyncsm So glad you were here at #gyncsm. Hope to see you again on a future chat and sharing info for the community between chats using the tag :) |
| Christina Lizaso @btrfly12 @jillosopher @womenofteal Lovely to chat along with you again on #gyncsm :) |
| Christina Lizaso @btrfly12 Thanks Cissy for sharing so openly of your experiences and for all your advocacy. #gyncsm https://t.co/5BssekIbkP |
| Dee Sparacio @womenofteal @IvyRadOncMD @gyncsm We hope you can join us again in the future.We appreciate your participation. #gyncsm |
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