Palliative Care - a Joint #gyncsm and #hpm chat

This month we were pleased to offer a joint chat with #hpm (Hospice and Palliative Medicine). They also hold a chat the 2nd Wednesday of the month at 9pm. The topic for the chat was Palliative Care. We were joined by Dr. Christian Sinclair (@ctsinclair) a palliative and hospice medical care physician, editor at Pallimed and #hpm founder; as well as others from the #hpm community.

During the chat we welcomed 55 participants, posted 488 tweets and made 1,631,071 impressions.
The transcript can be found here and the analytics here.

Here are the topic questions and a sampling of the responses:

T1: What does the term "palliative care" mean to you? How do you think palliative care differs from hospice?

T1: palliative care focuses on helping patients achieve the best quality of life right up until the end of life #hpm #gyncsm

— Virtual Hospice (@VirtualHospice) June 11, 2015

T2A: Have you discussed palliative care with your doctor? Who brought it up? How did it make you feel?

T2B: When in the patient's treatment do they tend to get referred to a palliative care specialist? When is ideal?

T2B: The earlier the referral can happen, the better, but often limited by resources and patient/family acceptance. #hpm #gyncsm

— Merry J Markham, MD (@DrMarkham) June 11, 2015

T3: Are there medical / insurance requirements to obtaining palliative care?

My mom's insurance covered palliative care, but access was a problem in rural MN. She had to travel 4 hrs to see PC specialist. #gyncsm

— Katie Hoody (@kc_hoody) June 11, 2015

T4: What do you wish you would have known about palliative care? Doc's: What do you wish your patients knew?

T4: I wish people knew how supportive hospice is of the whole family, their needs, aiding understanding and acceptance, etc. #hpm #gyncsm

— Robin Martinez (@RobinSmrtPtient) June 11, 2015

T4: I wish my patients knew that using palliative care/hospice does not translate to dying sooner. I hear that too often. #hpm #gyncsm

— Merry J Markham, MD (@DrMarkham) June 11, 2015

T5: For those with experience with palliative care, what were the positives / negatives? 

Remember you can continue our discussion on SmartPatients. (http://gyncsm.blogspot.com/2014/10/continuing-our-chats-more-than-140.html)

We look forward to you joining us next month 9pm EST on July 8, 2015 to discuss Dealing With Anxiety.

Dee
Co-moderator #gyncsm


RESOURCES:

SGO article Comprehensive Care in Gynecologic oncology: The importance of Palliative Care. 

Palliative Care Fact Sheet from the NCI (@NCI).

http://www.cancer.gov/about-cancer/advanced-cancer/care-choices/palliative-care-fact-sheet

Cancer.Net (@cancerdotnet).
http://www.cancer.net/navigating-cancer-care/how-cancer-treated/palliative-care/caring-symptoms-cancer-and-its-treatment

Canadian Virtual Hospice
Main site:     http://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home.aspx
10 myths about Palliative Care : http://virtualhospice.ca/en_US/Main+Site+Navigation/Home/Topics/Topics/What+Is+Palliative+Care_/10+Myths+about+Palliative+Care.aspx

Pallimed
pallimed.org

Get Palliative Care
http://getpalliativecare.org/whatis/disease-types/ovariancancer/

Sarcoma Alliance 
http://sarcomaalliance.org/what-you-need-to-know/end-of-life-issues/ 

Palliative Doctors American Academy of Hospice and Palliative Medicine
http://palliativedoctors.org/faq

Medline plus Palliative site

http://www.nlm.nih.gov/medlineplus/palliativecare.html

U-tube Palliative Care: YOU Are a BRIDGE 

https://www.youtube.com/watch?v=lDHhg76tMHc

June 10th Chat - Palliative Care (A Joint Chat with #hpm )

Graphic by Christian Sinclair

This month on June 10th (9pm EST) we will be discussing Palliative Care. We are so happy to be hosting a joint chat with the #hpm (Hospice and Palliative Medicine) community. The #hpm chat founder, Christian Sinclair (@hpmchat / @ctsinclair) a palliative care and hospice medical doctor at the University of Kansas Medical Center and editor at Pallimed will be joining us. We also will welcome #hpm moderators Ashley and Niamh.

Our discussion will be guided by the following questions:

T1: What does the term "palliative care" mean to you? How do you think palliative care differs from hospice?

T2A: Have you discussed palliative care with your doctor? Who brought it up? How did it make you feel?

T2B: When in the patient's treatment do they tend to get referred to a palliative care specialist? When is ideal?

T3: Are there medical / insurance requirements to obtaining palliative care?

T4: What do you wish you would have known about palliative care? Doc's: What do you wish your patients knew?

T5: For those with experience with palliative care, what were the positives / negatives?

To prepare for the chat you may read this palliative care fact sheet from the NCI (@NCI).

http://www.cancer.gov/about-cancer/advanced-cancer/care-choices/palliative-care-fact-sheet

Also this article from Cancer.Net (@cancerdotnet).

http://www.cancer.net/navigating-cancer-care/how-cancer-treated/palliative-care/caring-symptoms-cancer-and-its-treatment

And this journal article Comprehensive Care in Gynecologic oncology: The importance of Palliative Care. 

Remember if you want to learn more about how to participate in tweet chats you can read this blog post. For this joint chat, include both #gyncsm and #hpm in your tweets.

We look forward to having you join our discussion or come and "lurk and learn".

Questions? Contact us at gyncsm@gmail.com.

Dee

#gyncsm co-founder and co-moderator

Advances in Personalized Medicine for Gyn Cancers - May 13,2015

Forty-five participants joined us for our May chat as we discussed Advances in Personalized Medicine. We were grateful to have Dr. Scott Richard (@sdr2md), Director of the Division of Gynecologic Oncology at Hahnemann University Hospital, and Kelly Mellott and Dr. Juan Avila from Helomics™ Corporation (@HelomicsCancer) share their expertise on this important and timely topic. Other participants included our health care moderators, researchers, health care providers, survivors and advocates. Chat analytics may be found here.

I've highlighted just a few of the tweets in response to our discussion questions.

T1A: What are some misconceptions you've heard about personalized medicine?

T1. Misconception: That tumors are genomically static and studying 1 sample (eg biopsy) will be informative for later line decisions #gyncsm

— Angela Alexander (@thecancergeek) May 14, 2015

T1A: Another big misconception is that these methods are too expensive and unaffordable for real patients #gyncsm

— Helomics (@HelomicsCancer) May 14, 2015

T1B: What personalized medicine options are currently available to gyn cancer patients? What is tested - tumor tissue, blood?

A1B: Current options include blood tests for genetic risk like BRCA, MyRisk, and Lynch Syndrome testing #gyncsm

— Scott Richard (@sdr2md) May 14, 2015

T1B: Our product, ChemoFx, is a treatment marker which tests a patient’s cancer cells response to various chemotherapeutic agents #gyncsm

— Helomics (@HelomicsCancer) May 14, 2015

Some orgs active w/ GYN cancer Precision Med @HelomicsCancer @ClearityFnd @FoundationATCG @myriadgenetics @carisls @AmbryGenetics #gyncsm

— Christina Lizaso (@btrfly12) May 14, 2015

T2: How does genetic testing impact treatment decisions? What genetic tests are recommended for gyn cancers?

Genetic testing not just for risk assessment and family knowledge, with PM genetic testing results factor into treatment decisions. #gyncsm

— Christina Lizaso (@btrfly12) May 14, 2015

T2 BRCA testing should be done on all ovarian cancers and can open new treatment options PARP inhibitors otherwise not available #gyncsm

— Rick Boulay,MD (@journeycancer) May 14, 2015

T3: How can I discuss personalized medicine options with my cancer care team? What if my doctor doesn't believe in these options?

A3: If your Doc doesn’t believe or use personalized tests, then ask her or him if they would want this information for their mom #gyncsm

— Scott Richard (@sdr2md) May 14, 2015

T3 Personalized medicine can mean different things to different folks. In speaking to clinicians make sure you are on the same page. #gyncsm

— Rick Boulay,MD (@journeycancer) May 14, 2015

T3: Remember, it is ALWAYS okay to seek a second opinion. It’s your treatment and your life – your doctor is part of your team #gyncsm

— Helomics (@HelomicsCancer) May 14, 2015

T4A: How do you think the President’s Precision Medicine Initiative will affect patients/ research?

T4 The Precision Medicine Initiative will bring research funding and interest into the topic. #gyncsm

— Rick Boulay,MD (@journeycancer) May 14, 2015

T4 - am hoping the president's PM initiative also covers personalized immunotherapy and not just genomics driven targets therapies #gyncsm

— Andy (@AndytweetM) May 14, 2015

T4B: What are the challenges to bringing the benefit of personalized medicine to gyn cancer patients? How will patient care change?

@gyncsm as ppl become thr own advocates of demanding good care from HCP. slowly u c personalized medicine. Findg ur voice #gyncsm

— Ann Wax (@annwax) May 14, 2015

If you want to read more of this informative discussion you may find the transcript here .

A list of resources shared by participants during the chat may be found at the end of this post.  

We hope you will join us on June 10, 2015 as we join with #hpm for a chat on Palliative Care. And be sure to watch for #gyncsm in tweets reporting the latest from the ASCO Annual meeting (#ASCO15, May 29-June 2).

Dee

#gyncsm co-founder and co-moderator

RESOURCES:

Precision Medicine and Targeted Therapy overview via @theNCI: http://t.co/OvBNHgBinH

Overview of immunotherapy tactics and trials for cervical and ovarian http://t.co/50EGJ4929S

@myriadgenetics: Companion Diagnostics Visit http://t.co/vjcgk78Kne

Personalized Cancer Therapy - MD Anderson https://pct.mdanderson.org/

Organizations active w/ GYN cancer Precision Medicine @HelomicsCancer @ClearityFnd @FoundationATCG @myriadgenetics @carisls @AmbryGene

Research explores new, personalized #ovariancancer treatments http://t.co/uGCZXNadXD

National Society of Genetics Counselors http://t.co/HJ6EgbJjxa

ASCO 2015 abstract PM and endometrial cancer- more to learn http://t.co/oJFl6EV8IG
ASCO abstract for PM and cervical cancer http://t.co/eSL3RnIXCv
ASCO abstract for ovarian cancer and PM http://t.co/PimP9Mx6aX

@CancerTodayMag article lists good questions to ask your Doctor http://t.co/zZrCctRxml

How to Talk so your Doctor Will Listen (not specific to PM) http://t.co/2VFICJBQDO

Patient resource for PM / olaparib treatment for #ovariancancer http://t.co/ovlGNH2J5F

Helomics™ Corporation :
patient section currently http://t.co/2vzrfni8gF
questions for your doctor for #ovariancancer: http://t.co/IllLM0Mav4
checklist to talk to your doctor for #endometrialcancer or #uterinecancer: http://t.co/gPQgDPYGmx

@myriadgenetics
“Personalizedmedicine is a game changer – it’s the future of medicine.”video   http://bit.ly/1OUi62f
#ovariancancer patient discussing PM http://t.co/8V7qPTjAtN

@permedcoalition The Case for Personalized Medicine - 4th Edition w/ Drugs/Relevant Gene Chart http://t.co/aYvmmjKmY3
Pg 6: % pts whose tumors driven by certain mutations could be targets for specific drugs, by cancer type http://t.co/Nm6Fg0wgLg

Bombarded w/Changes in Health Care & Beyond, Gyn Oncologists Prepare for the Challenges Ahead http://t.co/JcftUtVO0…

Fact Sheet President's Precision Medicine Initiative : https://t.co/A85dgI6S0E

#PARP inhibitors: A new era of targeted therapy #ovariancancer  http://t.co/73WAO2zmlM

Image of key pathways in #ovca  http://t.co/qR4qXxJBJS

Immune-Based Treatment Shows Promise against Metastatic Cervical Cancer http://t.co/4y4nFEGqkF

ovarian cancer FANG vaccine http://t.co/QXUAKclm6d

SGO genetic testing in gyn cancers: ovarian cancer https://t.co/lp5gWgW8FD
SGO Lynch testing statement for endometrial cancer https://t.co/lp5gWgW8FD
SGO statement on Next Gen multi- gene sequencing panels https://t.co/Mu8zBe3Y8r

Saving Tumor Tissue @OCRF Webinar http://t.co/FeYvQbk7Rq

@OncLive Search for Immune-specific biomarkers is in full swing: http://t.co/JXZRr00vPG

Imprecise marketing of precision medicine: Advertising may be running ahead of science http://t.co/cl1SKHbOvQ

Lecture by Dr. Funda Meric-Bernstam  MDACC https://t.co/n6w6exQQEf

Liquid Biopsies may change cancer care #gyncsm http://t.co/VD3MutGt78

@WSJhealth : A New Way to Use Old Tools Against #OvarianCancer http://t.co/L8dFeYl5h5

May Chat : Advances in Personalized Medicine for GYN Cancer

Our October 2013 chat topic was "Genetics and Personalized Medicine". Many new developments and initiatives have occurred since then. During our May 13, 2015 (9pm EST) chat we will provide an update on advances made in personalized medicine and how they impact the care of patients with gynecologic cancers.

In addition to our regular Health Care Moderators, Dr. Scott Richard (@sdr2md) Director of the Division of Gynecologic Oncology at Hahnemann University Hospital and Kelly Mellott and Dr. Juan Avila from Helomics™ Corporation (former known as Precision Therapeutics; they will be tweeting as @HelomicsCancer) will join us for this important discussion. Helomics™ Corporation is a healthcare company that develops innovative diagnostics for the oncology field. PLEASE NOTE: Helomics' participation in this chat is NOT an endorsement of the company's products or services by the #gyncsm community or our health care moderators.

The discussion questions are:

T1A: What are some misconceptions you've heard about personalized medicine?
T1B: What personalized medicine options are currently available to gyn cancer patients? What is tested - tumor tissue, blood?
T2: How does genetic testing impact treatment decisions? What genetic tests are recommended for gyn cancers?
T3: How can I discuss personalized medicine options with my cancer care team? What if my doctor doesn't believe in these options?
T4A: How do you think the President’s Precision Medicine Initiative will affect patients/ research?
T4B: What are the challenges to bringing the benefit of personalized medicine to gyn cancer patients? How will patient care change?

To prepare for our discussion you may read  President Obama's Precision Medicine Initiative Fact Sheet . Additional articles/resources may be found on the CDC's Public Health Genomics page and on the NCI's Precision Medicine and Targeted Therapy page.

We look forward to having you join our discussion or come and "lurk and learn".

Dee
#gyncsm co-founder and co-moderator

World Ovarian Cancer Day - May 8, 2015

The #gyncsm community is pleased to once again partner with the cause World Ovarian Cancer Day (WOCD).  WOCD will be held this year on May 8, 2015. This year’s theme is “Celebrate Women”.

WOCD, was first held in 2013. It unites organizations from around the world in their efforts to raise awareness of ovarian cancer. The reasons a special day is crucial for the effort include the lack of an early detection test for the disease, symptoms similar to less serious illnesses, and high mortality rates.  

Many of our followers know the stats for the US. An estimated 22,000 women will be diagnosed with ovarian cancer and 14,000 women’s lives lost each year. (http://seer.cancer.gov/statfacts/html/ovary.html) 

Do you know the global impact?

A quarter of a million women are diagnosed worldwide with ovarian cancer and the disease is responsible for 140,000 deaths each year. While 89% of the women diagnosed with breast cancer survive five years only 45% of women diagnosed with ovarian cancer survive that long. 

What can you do?

Celebrate the women in your life by visiting the www.ovariancancerday.org.  While on the site you can pledge your support of WOCD and share information about the disease and the Day with five of your friends.  Read the personal stories of women from around the world at http://ovariancancerday.org/personal-stories/

Follow WOCD on facebook at https://www.facebook.com/WorldOvarianCancerDay), 

Follow WOCD on Twitter https://twitter.com/OvarianCancerDY and share tweets such as these:

• By signing the pledge, you join the global movement to raise awareness of ovarian cancer on May 8 http://bit.ly/WOCDpledge  #WOCD 
• May 8th is #WOCD awareness and education for #ovca . Visit ovariancancerday.org and build one voice for every woman. #UnbreakableBond
• Learn the facts about #ovca - raise awareness of the disease for women everywhere. Visit ovariancancerday.org  #WOCD #UnbreakableBond

Thanks for joining our efforts to raise awareness of ovarian cancer worldwide and don't forget to wear teal on May 8^th.

Dee

#gyncsm co-founder