Immunotherapy - March 2018 Chat

"Very exciting to be a part of this important work. That was my goal all along...I didn't think the treatment would actually WORK to cure my cancer...I just hoped to be a part of something that would further the possibility of a cure"- Sue Scott 

"We have to continue to spread the word and help educate about immunotherapy and clinical trials. Always Hope and Believe" - Aricca Wallace

"They have enabled years of laboratory research that is still going on." - Dr Christian Hinrichs

For this month's  Immunotherapy chat we welcomed NIH researcher, Dr. Christian Hinrichs (@CSHinrichsMD), as well as patients Sue Scott (@SurvivorSueWDC) and Aricca Wallace (@mandmsportsmom), who provided their unique insight into participating in immunotherapy clinical trials.

We had 30 participants and over 1.5 million impressions. You may find more analytics here and a complete transcript here.

Here is a sample of the responses our guests and participants provided:

T1A: What is immunotherapy? How is it different from other gyn cancer treatments (surgery, chemo, radiation)? 

• Unlike other treatments, immunotherapy uses the body's own immune system to help fight the disease
• Immunotherapy stimulates immune response or modifies it so that immune cells can recognize and kill cancer cells.
• immunotherapy works with your immune system to target cancer cells. For gyn cancers, this type of treatment is primarily being studied through clinical trials and our knowledge is advancing rapidly

T1B: @CSHinrichsMD - What did your immunotherapy trial for HPV-related gyn cancers entail?

• Immunotherapy is a type of treatment that uses the patient’s own immune system to fight the cancer. The immunotherapies that we are discussing today are based on T cells, a type of immune cell that specializes in killing abnormal cells.There are two types of immunotherapy that have received a lot of attention lately. One is checkpoint inhibitors. These drugs block inhibitory signals sent to T cells by other cells. This is “releases the brakes” so the T cells can attack the cancer cells. The other is adoptive T-cell therapy (ACT). For this, the patient’s T cells are grown in the lab and then infused back to the patient to treat the cancer. This is what @mandmsportsmom and @SurvivorSueWDC received. The T cells for ACT can be grown from a tumor that is removed by surgery. These are called tumor-infiltrating T cells (TIL). T cells from ACT can also be grown from blood and genetically engineered to have receptors that let them target the tumor. One type of receptor is called a CAR. Another is called a TCR. 
•  Our current clinical trials use T cells that are engineered to have TCRs. This does not require surgery, and it seems to more consistently and potently target the cancers

T2: For the patient, what is the immunotherapy treatment experience like? What are the common side effects with immunotherapy? 

• @mandmsportsmoman ...After 18 rounds of chemo and 32 rounds of radiation...immunotherapy was a God send! I had to have a tumor removed and the t cells grown in the lab, had aphoresis to remove white blood cells and together they trained in the lab. I was given 7 days of chemo to deplete immune system.The t cells and my trained wbc were then put back in me. Millions of cancer cells being injected was scary! The trained wbc immediately recognized the tumors and started attacking. While this was happening it was like having the flu x 1000..fever, chills, etc just like fighting any other virus. The interluken 2 that you are given after injection, I call it gatorade for the cells. Would just ramp them back up again and symptoms of high fever, chills, etc would start again..nothing that nurses and meds couldn't help control. 
• @survivorsuewdcan  I always say that Dr. H took out my immune cells and sent them to 5 weeks of KUNG FU school (genetically altered them in his lab) and then put 74.5 BILLION of them back in me! I feel the side effects were easier to handle than the ongoing side effects of chemo and radiation.Because the immuno trial I was in included 7 days of chemo ( to rid my body of its current TIL cells and make space for the " new and improved ones that Dr. H had "built" in his lab) I did lose all my hair. I also was sick from the IL2 doses.
• Checkpoint inhibitors that target PD-1 have remarkably few side effects. This has been revolutionary.
• Cell therapy is a more intense, often inpatient, treatment that can have many side effects.

T3A: Is immunotherapy common in treating gynecologic cancers? Is it only offered through trials?

• There are emerging data for immunotherapy in some gyn cancers, and patients can receive some treatments outside of clinical trials. Nonetheless participation in clinical trials is best whenever possible as we are still learning about these treatments.
• One of the issues is ensuring immunotherapy can identify tumor cells well. There's a lot of interest in radiation synergizing with immunotherapy. Example trial for cervical/endometrial cancer: https://clinicaltrials.gov/ct2/show/NCT03192059?term=immunotherapy+radiation+endometrial&rank=2

T3B: Patients - How did you find out immunotherapy was an option? What were your concerns? What led you to go forward with enrolling in a trial?

• Another God send. @cshinrichsmd reached out to former colleagues. One that happened to be my current gyn onc.
• You learn you have to be an advocate for yourself. I now tell ppl to check out https://clinicaltrials.gov/ to see what is out there 

T4: What advice would you give to others considering an immunotherapy trial, or any clinical trial? 

• DO IT! Once "standard treatment" doesn't work - what do you have to lose! New breakthroughs happen daily 
• You don't need to wait for your medical team to bring up trials. You can do your own research or reach out to patient advocates or advocacy orgs
• Re clinical trials, shop around. There are lots of them, and they are not all equally good. Look at past results.
• Don't accept that the only answer is to control not cure you may have to control for awhile there is hope given daily w/trials

T5: @CSHinrichsMD - How did patients, including our guests, contribute to your immunotherapy research? What did you learn from them and where is the research now heading?

• @cshinrichsmd T5: @mandmsportsmom and @SurvivorSueWDC are the brave volunteers who first showed that this type of treatment can work. They did this when all we doctors could say was that it seemed like a good idea. Studies that we did on samples that they donated have shown us which patients are more likely to respond to this type of treatment. Study of @SurvivorSueWDC led to the discovery of a new treatment that we hope to test soon.They have enabled years of laboratory research that is still going on.

T6: What are some resources for leaning more about immunotherapy in treating cancer? For finding out what's new and what trials are open?

• The most comprehensive resource for clinical trials is https://clinicaltrials.gov/. There is a lot of information and advice from your doctor is important. The NIH Clinical Center has many immunotherapy trials. Patients are not charged for medical care at the NIH. In some cases, travel is also free. https://clinicalstudies.info.nih.gov/ Also, for patients with advanced-stage, HPV-related cancers, like cervical, vaginal, and vulvar cancers, I am easy to find. https://ccr.cancer.gov/Experimental-Transplantation-and-Immunology-Branch/christian-s-hinrichs

Additional resources mentioned during the chat may be found below.

Patients and caregivers are invited to continue our discussion on the Smart Patients platform at https://www.smartpatients.com/partners/gyncsm

Join us next month on our regular day (second Wednesday of the month) Wednesday, April 11, as we discuss SGO Annual Meeting Research Review and Ask the Docs. 

See you next month and thank you for using the #gyncsm to share news of interest to our community.

Dee
Co-founder #gyncsm

RESOURCES

@FacingOurRisk new info section w/ an overview on #immunotherapy for #cancer treatment.
http://www.facingourrisk.org/understanding-brca-and-hboc/information/cancertreatment/immuno-oncology/index.php

What You Need to Know About Immunotherapy Side Effects via @cancerdotnet 
https://www.cancer.net/blog/2018-02/what-you-need-know-about-immunotherapy-side-effects

@SITcancer released new consensus recommendations on recognition & clinical management of immune-related side effects of immunotherapy. 
https://www.medpagetoday.com/reading-room/asco/immunotherapy/71026

@DanaFarber New Clinical Trials Test Immunotherapy for Cervical Cancer
http://blog.dana-farber.org/insight/2018/03/new-clinical-trials-test-immunotherapy-cervical-cancer/

Sue's Washington Post article
https://www.washingtonpost.com/national/health-science/cancer-was-killing-her-she-tried-immunotherapy/2014/11/10/0b252ae8-4fb4-11e4-babe-e91da079cb8a_story.html?utm_term=.0deb48a39453

Articles about #ovariancancer treatment vaccine trials https://medicalxpress.com/news/2017-04-world-ovarian-cancer-vaccine-trial.html and http://www.uphs.upenn.edu/obgyn/research/ovarian_clinical.htm  [updated link 1/11/2019 https://www.pennmedicine.org/news/news-releases/2018/april/personalized-tumor-vaccine-shows-promise-in-pilot-trial ]
 
Overview from @theNCI - Immunotherapy to Treat Cancer
https://www.cancer.gov/about-cancer/treatment/types/immunotherapy

Overview from @cancerdotnet – Immunotherapy and Vaccines https://www.cancer.net/navigating-cancer-care/how-cancer-treated/immunotherapy-and-vaccines

@CancerResearch has an immunotherapy trials #ovariancancer page http://cancerresearch.org/immunotherapy/cancer-types/ovarian-cancer and #cervicalcancer page http://cancerresearch.org/immunotherapy/cancer-types/cervical-cancer

patient recruitment page for the NIH https://www.cc.nih.gov/recruit/

A survey on state of patients' Immunotherapy knowledge by @teaminspire - Infographic: 
https://corp.inspire.com/resource/2017-immunotherapy-awareness-infographic/

NYTimes Article - Doctors Said Immunotherapy Would Not Cure Her Cancer. They Were Wrong.
https://www.nytimes.com/2018/02/19/health/ovarian-cancer-immunotherapy.html

How CAR-T Therapy, Known As A 'Living Drug,' May Help To Kill Forms Of Cancer ( #mmsm )
http://keranews.org/post/how-car-t-therapy-known-living-drug-may-help-kill-forms-cancer

PET Scans Could Identify Those Likely to Respond to PD-1-targeted Cancer Therapies 
https://immuno-oncologynews.com/2018/03/09/pet-scans-could-identify-those-likely-to-respond-to-pd-1-targeting-immunotherapy/

Collaboration key to identification, incorporation of biomarkers for immuno-oncology 
https://www.healio.com/hematology-oncology/practice-management/news/online/%7B64654536-7fa7-4d43-b57d-ae9b4d027a7f%7D/collaboration-key-to-identification-incorporation-of-biomarkers-for-immuno-oncology

"In Cancer Trials, Minorities Face Extra Hurdles" Researchers actually (falsely) believe people in minority groups have lower incomes & less education, & therefore less awareness of medical studies.
https://www.nytimes.com/2016/12/23/health/cancer-trials-immunotherapy.html?smid=tw-share

clinical trials check out this @SGO_org video
https://www.sgo.org/patients-caregivers-survivors/clinical-trials/

March 14th Chat: Immunotherapy

We are pleased to be discussing Immunotherapy in Gynecologic Cancers with NIH researcher Dr. Christian Hinrichs (@CSHinrichsMD) and patients Sue Scott (@SurvivorSueWDC) and Aricca Wallace (@mandmsportsmom) during our monthly #gyncsm chat on Wednesday, March 14th at 9:00pm ET. 

Dr. Christian Hinrichs' research focuses on immunotherapy for HPV positive cancers including cervical, vulvar and vaginal cancers. Read more about his research and trials here. Sue Scott, following a diagnosis of metastatic cervical cancer, took part in one of Dr. Hinrichs' trials in 2013. You may read her story here. Aricca Wallace discovered she had stage III cervical cancer in 2011 and went through 32 rounds of chemo and 25 days of radiation. Aricca also took part in Dr. Hinrichs' clinical trial. You can read about her experience here. 

The NCI/NIH Immunotherapy to Treat Cancer site states that immunotherapy is a type of biological therapy that helps your immune system fight cancer. Dr. Hinrichs' research deals with T-cells, white blood cells, that target two specific HPV proteins.

Our topic questions will include: 

What is immunotherapy? How is it different from other gyn cancer treatments (surgery, chemo, radiation)? 

What is the immunotherapy treatment experience like? What are the common side effects with immunotherapy? 

Is immunotherapy common in treating gynecologic cancers? Is it only offered through trials?

Patients - How did you find out immunotherapy was an option? What were your concerns? What led you to go forward with enrolling in a trial?

What advice would you give to others considering an immunotherapy trial, or any clinical trial? 

@CSHinrichsMD - How did patients  contribute to your immunotherapy research? What did you learn from them and where is the research now heading?

What are some resources for learning more about immunotherapy in treating cancer? For finding out what's new and what trials are open?

We hope you will join us to learn more about how immunotherapy works, immunotherapy clinical trials and hear about the experiences of two women whose cancer was treated with immunotherapy. 

See you on Wednesday. 

Dee 

#gyncsm Community Co-founder

Let's Talk - Patient / Physician Communication Feb 7, 2018

We know that communication plays an important role in the relationship patients have with their health care providers. During this month's #gyncsm chat, Let's Talk - Patient / Physician Communication, we discussed how communication has changed over the past few years, how you describe "good communication" and we finished the chat discussing the new ASCO Patient-Clinician Communication Guideline. We were pleased to have ASCO (@ASCO) and Timothy Gilligan (@TimGilliganMD) Cleveland Clinic, join us for this very important chat. We had 38 participants and 2.5 M impressions during the one hour chat. You may find the more analytics here and the complete transcript here.

Some sample responses to our questions appear below. Please see the transcript for more tweets.

T1: What shifts over time have you seen in communication between patients and physicians? What seems better? What seems worse?

• Shared decision making is for the better for all! 
• From a Docs POV, patients are more knowledgeable and engaged in their disease and how they’d like to treat it. Sometimes Dr Google can give patients misperceptions
• I worry about impact of EMR. Is there eye contact with physicians or are they they staring at the computer screen?
• there has been a shift away from paternalism (i.e. not telling a patient that they had cancer because it would be "upsetting") =good for openness. Flip side, demands from behind the scenes (billing, charting) can cause distraction & less attention during appointments

T2: What does "good communication" between patient and physician look like for you?

• Good communication requires listening and the Take 5 rule. Take at least 5 minutes to listen, 5 to comprehend/consider, & 5 to respond.
• T2: (I'm not a physician) but in my interactions with patients & families, "good communication" looks like a "normal" conversation that you might have w/ a friend: mutual info seeking+info giving+ reflecting on goals and purpose behind decisions and choices.
• Listen, look & feel with compassion & understanding. Take your eyes off the computer screen
• T2:@alihaider99  presents at @ASCO  study Results: Large majority of patients, 72%, preferred face-to-face interactions. Physicians who communicated face-to-face were perceived to be more compassionate, professional, and better communicators.
• I find the listening, curiosity, empathy and a willingness to work collaboratively are key. Plus sincere interest in the person 

T3: What do you wish more doctors would do when it comes to communication? / What do you wish more patients would do when it comes to communication?

• I know for myself that I can spend more time preparing questions and other things to get the most out of the appointment.
• Again, from the psych perspective, I hear patients talk about wanting respect. I hear physicians talking about pressure to be infallible. 
• Doctors: Please look me in the eye, and do not be afraid to admit you do not know the answer to my question.
• Be honest transparent respectful and just have a conversation. It’s that easy.
• One of our leaders challenged us to say "I don't know" more often. Wise advice

T4: What prompted @ASCO to produce the communication guideline as part of itsSupportive Care and Treatment Related Issues guidelines? What are the key points?

• T4: Improved communication has been associated with improvements in several health outcomes, and patient-physician communication was identified as a high-priority topic by our Supportive Care Guidelines Advisory Panel
• T4: The guideline includes recommendations for clinician training in communication skills; facilitating family involvement in care; and discussing goals of care and prognosis, treatment selection, and end-of-life care
• T4: The guidelines also remind me how much cancer docs have to cover and how complex each area is on its own. Was good to see communication training mentioned as well.
• Communication, while intuitive in care, is often difficult to do effectively. Most orgs should promote guidance for effectively communicating. @ASCO took the bull by the horns & its a good thing

T5: Why was it important to include family involvement as part of the Patient-Clinician Communication guideline?

• T5: From my perspective as an oncologist, family and other loved ones are key to getting through cancer treatments.
• T5: Most people don't make decisions in a vacuum but in the context of their relationships.
• So important. So so important. Patients make decisions with support of caregivers, who can often provide some clarity in the chaos of diagnosis
• Cancer care is a family affair.
• Most patients discuss treatment with family and often rely on family to get to treatment and help manage side effects

T6: Hope and empathy are incorporated into the Patient-Clinician Communication guideline. What is it important for patients and physicians to consider when it comes to these concepts?

• T6: For me, empathy is the beginning, middle and end of good patient connection. If empathy is present, even the hardest conversations can happen.
• T6: Kindness and empathy can help diffuse negative emotions associated with cancer diagnosis/treatment, and may even help to improve patients’ outcomes
• T6 If we're talking about #precisionmedicine, and let's face it, we should be; empathy and hope are vital to the communication plan, to the wholeness approach to tx
• T6: I think that hope is trickier. In some cases, the hope is for the best quality of life, not for cure or survival. Communicating the nature of hope matters.

T7: How can both patients and physicians prepare for visits and lay the groundwork for good communication? What have you found helpful to get answers and keep everyone informed and connected between visits?

• T7: @l_schapira wrote a great blog post on @CancerDotNet about how patients and physicians can work together to make great communication happen https://t.co/8AmEy3gfVm
• T7 It's always good to have questions pre-written before an appt. Have a care journal to jot down things of concern to be later discussed. 
• T7: And @CancerDotNet has great tips for patients to talk to their care team, including specific questions to ask about 200+ types of cancer https://t.co/KAm3AxrBUf
• Here are five steps to guide you in becoming a partner with your doctor in determining and guiding your #cancer treatment. #gyncsm #PatientEngagement https://t.co/1oqXq6GScw
• T7: physicians can directly encourage open communication & questions. They lay groundwork by being authentic, present. 
• T7: make lists. frame your symptoms. engage in relationship-building. more in #TalkingToYourDoctor https://t.co/ekNJREQ6T1

Please scroll down to find resources shared during this chat.

Patients and caregivers are invited to continue our discussion on the Smart Patients platform at https://www.smartpatients.com/partners/gyncsm

Join us next month on our regular day (second Wednesday of the month) Wednesday, March 14, 2018 at 9pm ET as we discuss Immunotherapy with guest Dr Christian Hinrichs.
Have a good month, 

Dee
#gyncsm Co-founder
RESOURCES

• ASCO  Patient Clinician Guideline https://www.asco.org/practice-guidelines/quality-guidelines/guidelines/supportive-care-and-treatment-related-issues#/27581
• Patient-physician communication: an important contributor to cancer care https://www.youtube.com/watch?v=U_o9ryKYbAs&feature=youtu.be
• 2017 ASCO Palliative Care: Patients With Advanced Cancer Prefer Oncologists Not Use Computers in the Exam Room http://www.ascopost.com/News/58179 study by @alihaider99
• Being Mortal | Watch S33 E6 | FRONTLINE | PBS | Official Site  https://www.pbs.org/wgbh/frontline/film/being-mortal/
• Role of Kindness in Cancer Care http://ascopubs.org/doi/abs/10.1200/JOP.2017.026195
• Communication is Teamwork https://www.cancer.net/blog/2016-01/communication-teamwork
• Taking Charge of Your Care https://www.cancer.net/navigating-cancer-care/managing-your-care/taking-charge-your-care
• Cancer Treatment Decisions https://www.kxly.com/lifestyle/health/cancer-treatment-decisions-5-steps-to-help-you-decide/690498083
• @theNCI Patient version Communication in Cancer Care  https://www.cancer.gov/about-cancer/coping/adjusting-to-cancer/communication-pdq
• Talking to your Doctor https://www.amazon.com/Talking-Your-Doctor-Patients-Communication-ebook/dp/B00E72RT56/ref=la_B004W7A1LU_1_1?s=books&ie=UTF8&qid=1516652534&sr=1-1

February 7, 2018 Chat : Let's Talk- Patient / Physician Communication

An important part of the patient-physician relationship is communication. This month we are holding our chat a week early on Wednesday, February 7, 2018 (9pm ET | 8pm CT | 6pm PT) and our February topic is Let's Talk - Patient / Physician Communication. 

Evidence shows that better communication of health care information leads to better outcomes for patients in a number of different ways. We also know that communication related to cancer has its own set of challenges. Patients have said that hearing the words, "You have cancer", impacts them in a way in which they don't hear what their physician says next. Patients are processing those words and experiencing many different emotions. Oncologists while sharing a cancer diagnosis with a patient and their family are also challenged to provide not only scientific information but support. At diagnosis, while discussing treatments, in addressing survivorship issues and end of life care, communication is a key part of the patient and clinician relationship.

Recently, ASCO (The American Society of Clinical Oncology) took on the task of developing the Patient Communication:ASCO Consensus Guideline. An expert panel was assembled to answer the question, What communication skills and tasks can clinicians use to optimize the patient-clinician relationship, patient and clinician well-being and family well-being?. We are pleased to be joined this month by Timothy Gilligan, MD (@TimGilliganMD) Co-chair of the ASCO panel and Kari Bohlke (@karibohlke), ASCO staff member to discuss the Guideline and cancer-care communications.

Below are the questions we will ask during our chat:

T1: What shifts over time have you seen in communication between patients and physicians? What seems better? What seems worse?

T2: What does "good communication" between patient and physician look like for you?

T3: What do you wish more doctors would do when it comes to communication? / What do you wish more patients would do when it comes to communication?

T4: What prompted @ASCO to produce the communication guideline as part of its Supportive Care and Treatment Related Issues guidelines? What are the key points?

T5: Why was it important to include family involvement as part of the Patient-Clinician Communication guideline?

T6: Hope and empathy are incorporated into the Patient-Clinician Communication guideline. What is it important for patients and physicians to consider when it comes to these concepts?

T7: How can both patients and physicians prepare for visits and lay the groundwork for good communication? What have you found helpful to get answers and keep everyone informed and connected between visits? 

Our recommended readings for this chat are the ASCO Guideline which can be found at:
http://ascopubs.org/doi/full/10.1200/JCO.2017.75.2311
and the American Cancer Society page The Doctor Patient Relationship:
https://www.cancer.org/treatment/understanding-your-diagnosis/talking-about-cancer/the-doctor-patient-relationship.html

We look forward to having you join us on February 7th for this very important discussion.

Dee and Christina
#gyncsm Co-founders

January 10, 2018 Chat: Caregivers Wants and Needs

Happy New Year!

We were pleased to have Lauren Hand (@LCooperHand) a Gynecologic Oncology Fellow at Magee-Womens Hospital of University of Pittsburg Medical Center and investigator on "The Essential Elements of Caregiver Support in Gynecologic Oncology", join us as our guest for this month's chat.

Forty-six participants joined us as we discussed #carepartners and #caregiver needs and wants. You may find additional analytics here.

We asked six questions and have included some responses to those questions below. For the complete transcript please visit Symplur.

T1: What are the top two things you would tell healthcare providers about the needs of caregivers that you think they need to hear?

• Caregivers need to make time to care for themselves mentally and physically and they need to accept help from others
• I'd tell providers that caregivers suffer the same level of burnout that physicians experience & that it should a consideration when designing a care plan
• T1: 1. Importance of self care. 2. See number 1.
• #Carepartners need access to information for care coordination. What forms/permissions need to be granted to allow carepartners to consistently speak on patients behalf & engage w/ care team.

T2: What would you share with those new to caregiving? What do you wish you or your caregiver had known about the caregiving role?

• T2: Be sure you have a HIPAA clearance in place so you can get your person's medical info and give input to the doctor when the patient cannot or does not.
• A2: It is essential to have your own support system. Seek out a support group and/or a professional therapist to address your own feelings and struggles. If people offer help, take it. You do not have to do it all and you shouldn’t
• T2: That any decision your patient and you make is the right decision for now, regardless of how it turns out. We can't see the future. Jump on the horse and ride it!
• Caregiving is one of the hardest roles ever. Important for caregivers to make time for themselves, allow help, ASK for help.

T3: What are some of the barriers to family caregivers getting access to and utilizing the support services they want and need?

• T3 I’m my biggest barrier. I feel no one will give my loved one the care that I will because I love them
• Barriers to accessing and utilizing support services are often rooted in lack of awareness of what is available or that they even exist, financial concerns, and time. Additionally, many caregivers place personal/internal pressure on themselves to do it all. 
• The biggest barriers are realization that caregivers need help themselves. Actually finding and tapping into resources is also tough
• Speaking from a tech side, interoperability deficits keep patients and caregivers from connecting the dots of their care & support. Access is a peculiar thing when communication is an obstacle

T4a: What resources for caregiver support have you found in your area (formal and informal)? Have you utilized these resources?

• my hospital offers a caregiver support group, but my husband never went. Too busy, inconvenient time of day. 
• caregivers in US and Canada can reach out to @cancerhopenet to be matched to support volunteers who are caregivers. 
• my cancer dx and tx propelled us to finally find a spiritual home in joining a church. Not exactly caregiver support, but we can’t do this living and needing alone 
• @Smartpatients is good for helping caregivers, patients, and concerned friends get up to speed with all the terminology involved in disease and care. No question is too small or too large. 
• T-4 There has only been one local resource which was found late after my dx, not used. However, multiple online resources were utilized: @teaminspire was one. I also helped start a FB group called Friends and Family just for this purpose.

T4b: How did you find out about local caregiving resources - physician, nurse, cancer center, nonprofit, etc.?

• none of the above. It was all found via personal online searching. Great reason for office liaisons
• I heard about Caregiver resources from my cancer center's social worker.
• It was not easy! I found out about local resources through online searches and some support groups post their information in the local paper. Word of mouth/friends can be a good resource, as well as the hospitals in the area.

T5: If you could design a local family caregiver support program, what would that look like? What would you see as most important?

• I think some online modules or TELhealth style for quick consults could be helpful in taking time when you find that free 15min 
• Include a 24/7 support line when you need someone available to talk through the difficult times.
• I'd love to see #carepartners be able to reach out to another #caregiver at the same cancer center to help navigate the maze of paperwork , tests, insurance, scheduling. Every center has their own routine, requirements
• You know, even basics, like a list of the grocery stores in the area that do Click and Ship and help setting up - practical things
• Honestly, I think it should be multifaceted. Not every patient/caregiver responds in same way. I would make sure KIDS were an area of focus. I may also divide care by severity of disease at this can greatly impact the level of necessary care
• I would like a caregiver support group that addresses the needs of younger families/caregivers. This includes better and more flexible scheduling. My particular area lacks non-English speaking support groups, which leaves a lot of people without resources.

T6: What national/digital resources for caregivers have you found helpful? How can national and local programs work together?

• Resource | @CancerCare Caregiver resource page https://t.co/OVvlHtJ8kD
• Resource | Family Caregiver Alliance https://t.co/6FgV2vrN3N (800) 445-8106
• some more resources @SHAREing @CancerCare
• @CancerDotNet has great information about caregiving
• T6: Resource | Caring for the Caregiver Cancer Survival Toolbox® via @CancerAdvocacy https://www.canceradvocacy.org/resources/cancer-survival-toolbox/special-topics/caring-for-the-caregiver/

A complete list of resources shared during the chat may be found below. 

The Essential Elements of Caregiver Support in Gynecologic Oncology project:
If you are a caregiver of or a patient with gyn cancer interested in sharing more ideas about caregiving in a formal survey you are invited to participate in an online survey. Participation would involve 2-3 hours of your time through online surveys. Please contact (Lauren Hand) at handlc@upmc.edu.

Continue this conversation by joining us on the Smart Patients platform  (https://www.smartpatients.com/partners/gyncsm).

The February #gyncsm chat topic will be "Let’s Talk - Communication" focusing on patient-doctor communication.

We hope to see you then.

Dee
#gyncsm Co-founder

RESOURCES
@cancerhopenet Cancer Hope Network

@CancerSupportHQ Cancer Support Community https://www.cancersupportcommunity.org/caregivers

@Smartpatients Smart Patients Caregivers Group

@CancerDotNet Cancer.net

@SHAREing SHARE Caregiver Support https://www.sharecancersupport.org/caregivers-support/

@theNCI https://www.cancer.gov/resources-for/caregivers

@AmericanCancer American Cancer Society https://www.cancer.org/treatment/caregivers.html

@livestrong LIVESTRONG https://www.livestrong.org/we-can-help/caregiver-support

@CancerCare Caregiver resource page https://www.cancercare.org/tagged/caregiving

@ASCO Cancer.net international patients caregiver info https://www.cancer.net/coping-with-cancer/finding-support-and-information/international-patient-information

Caring for the Caregiver Cancer Survival Toolbox® via @CancerAdvocacy https://www.canceradvocacy.org/resources/cancer-survival-toolbox/special-topics/caring-for-the-caregiver/

Family Caregiver Alliance https://t.co/6FgV2vrN3N (800) 445-8106