Friday, 9 March 2018

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

Wednesday, 7 February 2018

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?
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

Friday, 2 February 2018

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


Wednesday, 10 January 2018

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?
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


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

Friday, 5 January 2018

January '18 Chat: Supporting Caregiver Wants and Needs

Happy New Year to our community!



We will begin a new year of chats on Wednesday, January 10, 2018 with a discussion on Supporting Caregiver Wants and Needs. Our guest will be Lauren Hand, (@LCooperHand) a Gynecologic Oncology Fellow at Magee-Womens Hospital of University of Pittsburg Medical Center. Ms Hand is an investigator on The Essential Elements of Caregiver Support in Gynecologic Oncology, a project through the University of Pittsburgh. The goals of the project are to identify the unmet needs of family caregivers, summarize the current state of practice of supporting caregivers, and propose a set of essential and actionable elements to be included in any caregiver support program in gynecologic cancer.

The questions that we will use to guide are discussion are:

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

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

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

T4a: What resources for caregiver support have you found in your area (formal and informal)? Have you utilized these resources?
T4b: How did you find out about local caregiving resources - physician, nurse, cancer center, nonprofit, etc.?

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

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

You may want to check out Cancer.net's pages on Caregivers Taking Care of Themselves:
https://www.cancer.net/coping-with-cancer/caring-loved-one/caregivers-taking-care-themselves

We look forward to chatting with you on Wednesday. 

Dee and Christina 
Founders Gyncsm

Wednesday, 13 December 2017

December 13, 2017: I've Survived - Dealing with Side Effects and Other Losses

This month, during our chat I've Survived - Dealing with Side Effects and Other Losses, we discussed physical and emotional losses experienced by gynecologic cancer patients and survivors.




We were pleased to welcome a number of new participants among the 26 people who joined us.  You may find our analytics here and a transcript here.

Below are the questions Christina used to guide our discussion along with some sample answers. Please read the complete transcript for all the comments.

T1: When you think of the losses you’ve experienced related to gynecologic cancer, what are the first things that come to mind? 
  • When I think of losses I think friends lost to OC, the organs that allowed me to have my children, my ability to recall words quickly.
  • T1 loss of control, loss of carefree living, loss of ability to assume things are ok even if it’s a false assumption
  • T1: For me, it's the faces of ovarian cancer survivors I have worked with over the years who are no longer here to advocate.
  • Cancer is a string of losses - of many kinds, so of course, there is lots of grieving as well. How could there not be?
T2: What physical losses have you experienced? Have you talked to your provider about them? Pls share any tips that have helped you.
  • T2 Physically- organs: repro, vagina, bladder, portions of sm & lg intestine, left kidney, nephrosis of rt kidney, gall bladder, thyroid,
  • T2 Feeling the toes in my left foot, My thick hair ( after losing it twice it is thin) 
  • T2 whatever physical losses, care team must take seriously their effects on function and quality of life 
  • And it seems that physical losses tend to change how we see ourselves socially, emotionally...
T3: Has the death of women with a similar diagnosis affected you? What tactics do you put into action to deal with losses of friends and family? 
  • When you participate in disease communities, loss comes with it... And it is okay to step away from time to time and recharge
  • T3 A year after my recurrence I lost 4 friends from my support group. I was devastated, guilty, and scared of recurrence. Speaking to the Social worker helped. She gave coping skills.
  • T3- Yes. I have helped women as mentor locally and distance & have spoken at multiple services. Having been diagnosed as 'terminal' this has impacted me terribly, major SURVIVOR'S GUILT!!!
T4: Women diagnosed w/ gyn cancers have said the loss of sexual intimacy has been difficult for them. What advice do you have for others? 
  • It’s mind-blowing that many doctors avoid talking about fertility & sexual health. We are all adults. There’s no room for stigma, taboos. Patients need answers to pressing questions & reali life concerns.
  • T4- Intimacy does NOT require being physical. Have not had 'sex' in 7+ years. But this does not mean we've not been intimate. Be adventurous. Find joy in the simplest things, a soft touch, kissing, etc. If done properly, partners can find MORE INTIMACY without sex.
  • T4: Even for the tough things, good to know there are lots of resources out there when you are ready. Being open to talking about it first step..
  • many of my brca+ friends who've had ooph talk about painful intercourse/vaginal dryness and feeling a loss of sexuality. Luckily they've worked with their providers to overcome those hurdles
T5: What areas of loss (physical, emotional, social or otherwise) do you think need more research? 
  • All of them.
  • T5: As we learn more about all of the losses, research has to focus on how we support women to LIVE fully despite the loss.
  • T5: The goal is to have more cancer survivors, but we have to plan for how to support them as well.
  • Also more scientific research to bring therapies from bench to bedside.
  • T5: I'd also love to see more research surrounding getting ahead of neuropathy. Chemo nurses have tips but nothing universal
Please scroll down to see a list of Resources shared during the chat. 

You may continue to discuss these questions with us on the Smart Patient Platform (https://www.smartpatients.com/partners/gyncsm). 

Mark your calendar for our first chat of 2018 on January 10th.  We will discuss Caregivers - their needs and wants with guest Lauren Hand, Gynecologic Oncology Fellow, Magee-Womens Hospital of UPMC.

We wish everyone Happy Holidays! See you in 2018!



Dee and Christina
Founders #gyncsm

RESOURCES

Nancy's Point There Will Be Tears at Christmas http://nancyspoint.com/will-tears-christmas/

Cancer rehabilitation @cancerDotNet https://www.cancer.net/survivorship/follow-care-after-cancer-treatment/rehabilitation

Renewing Intimacy & Sexuality after Gynecologic Cancer   http://www.foundationforwomenscancer.org/wp-content/uploads/Sexuality-Brochure_Final.pdf

Women's Guide to Sexuality During & After Cancer Treatment

@cancdotnet Managing menopause and side effects from treatment 
https://www.cancer.net/blog/2016-08/survivorship-after-gynecologic-cancer-managing-menopause-and-treatment-side-effects

In Shock  by Rana Awdish (book)

Society for Participatory Medicine @S4PM (organization)

Chemo Induced Peripheral Neuropathy - Participating in a Clinical Trial

Friday, 8 December 2017

December '17 Chat: I've Survived - Dealing with Side Effects and Other Losses


On various social media platforms we have heard women diagnosed with gynecologic cancers discuss the difficulties they have after diagnosis. They ask: When will I feel less tired? When will my hair grow back? When will the numbness in my hands and toes stop? When will I feel comfortable being intimate? Or they will share that they feel sad because they are unable to have children or because the friend they made during chemo has passed away. And others ask why they feel so isolated when all around them family and friends are happily celebrating the holidays. 

We will discuss these physical and emotional losses during this month's #gyncsm chat, I've Survived - Dealing with Side Effects and Other Losses on Wednesday, December 13, 2017 at 9pm ET. We welcome all those impacted by gyn cancer, wherever you are in your experience, along with previvors, caregivers, loved ones, advocates, healthcare professionals and those impacted by other cancers and serious illness.

We will use the following questions to guide our discussion:
T1: When you think of the losses you’ve experienced related to gynecologic cancer, what are the first things that come to mind? 

T2: What physical losses have you experienced? Have you talked to your provider about them? Pls share any tips that have helped you.

T3: Has the death of women with a similar diagnosis affected you? What tactics do you put into action to deal with losses of friends and family? 

T4: Women diagnosed w/ gyn cancers have said the loss of sexual intimacy has been difficult for them. What advice do you have for others? 

T5: What areas of loss (physical, emotional, social or otherwise) do you think need more research? 

We look forward to you joining us at 9pm ET on Wednesday, December 13th. 

Dee
#gyncsm Co-founder

Supplements / Vitamins Are they helpful? May 8, 2019 Chat

We were pleased to have Stacy Kennedy MPH,RD (@stacykennedyrd) join us for this informative chat on vitamins and supplements.  You may find ...