Monday, March 28, 2016

Our Voices Were Heard at The SGO Annual Meeting

As you know I was not able to attend the SGO Annual meeting in person but followed the research news and announcements on Twitter. Annie Ellis, a friend and fellow ovarian cancer survivor did attend the meeting. In my two previous posts on the meeting, I included a number of her in-person tweets. 

But Annie was more than a research advocate in attendance, she was a co-author of the presentation  "Survivors Acceptance of Treatment Side Effects Evolves as Goals of Care Change over the Cancer Continuum" presented by Dr Melissa Frey, NYU Langone Medical Center.

There are a number of meaningful endpoints in clinical trials - overall survival (OS), Progression Free Survival (PS), patient reported outcomes (PRO) and quality of life (QOL). In September 2015, an FDA workshop was held on alternative endpoints. The study presented at SGO by Dr Frey brought focus on the patients perspective on these endpoints.

Melissa Frey MD, Annie Ellis, Laura Koontz PhD, Savannah Shyne MPH, Jing-Yi Chern MD , Jessica Lee MD and Stephanie Blank MD undertook this study to determine whether survivors’ acceptance of treatment side effects changes over the course of living with the disease (NED, recurrence). To do this, Annie Ellis developed a survey and reached out to the ovarian, primary peritoneal and fallopian tube cancer communities for responses to questions related to treatment side effects and patient goals. Over three hundred women participated in the survey. I was one of those 300 women.

45% of the women had a treatment goal of overall survival
41% of the women had a treatment goal of quality of life
12% of the women had a treatment goal of progression free survival
2% of the women did not respond to the question

In response to the question "What is most meaningful to you"  most women chose either overall survival or ability to engage in daily activities.

The overall response to the questions "When asked what they expected from treatment" appears below.

When you separate out the responses of women who have had a recurrence 16% expected a cure and 53% remission. These findings are significant.

Participants were then asked what side effects they would tolerate to get a cure, remission or stable disease. This slide summarizes those responses.

Looking at just those women who have recurrent disease ( n-162) whose expectation is a cure their responses to what side effects they would accept are presented on this slide.

In conclusion:

I look forward to the development of the survivors' decision tool.

Did you take part in the survey? Were the results what you would have expected?
If you didn't participate, which side effects would you tolerate to get a cure, remission or stable disease?

Thank you Annie and all the co-authors for asking women diagnosed with ovarian cancer to share their expectations with the gynecologic oncology cancer community, for reporting those results to the community and for allowing me to share parts of the presentation with my readers.

Every Day is a Blessing! Blessed to have engaged ovarian cancer research advocates like Annie Ellis working with researchers dedicated to understanding the needs and expectations of survivors.

Wednesday, March 23, 2016

SGO News via Twitter - March 21-22

I appreciate the use of the #sgomtg hashtag by those advocates, gynecologic oncologists and researchers attending the SGO Annual meeting. It has allowed those of us unable to attend to stay on top of the research that can impact the lives of women with a gynecologic cancer.

This blog will cover tweets from the meeting dates March 21-22, 2016 .
The presentation by Dr Frey will be covered in a separate blog post.

You may find more information on enhanced recovery pathways in this journal article. (Enhanced Recovery in Gyneocologic Surgery )

CSC= cancer stem cell

Thank you to all the researchers who consider the needs of their patients as they develop better treatments, detection tests and a cure.

Every Day is a Blessing! 

Monday, March 21, 2016

SGO News via Twitter - March 19-20

Since I was unable to go to San Diego for this year's annual  SGO ( Society of Gynecologic Oncologists) meeting, I've been following the meeting's hashtag #sgomtg on Twitter instead.
Here are the tweets I favorited for the March 19-20th. 
ctDNA - Circulating DNA(

SNP = single-nucleotide polymorphism ("most common sequence variation in the human genome is the stable substitution of a single base" (

I appreciate the ability to have interactions with the gyn oncs and other advocates attending the meeting.

Check back on Wednesday for the tweets I found most interesting for the last two days of the meeting.

Every Day is a Blessing!

Thursday, March 17, 2016

ASCO's The State of Cancer Care in America (2016) and Clinical Cancer Advances

I have been busy spending time with family the past few weeks. The blog posts should be more regular going forward. Thanks for understanding. 

ASCO ( American Society of Clinical Oncology) produces a number of important reports each year of interest to survivors, advocates and caregivers.

The State of Cancer Care in America 2016  reports on the trends in oncology care in the US. The report found that there is a  shortage of oncologists in rural areas, there remains inconsistent insurance coverage for cancer patients and the cost of cancer care continues to rise.
Below is an infographic which summarizes the information and recommendations made in the report. You may read the full report here.

The second report of importance to survivors is Clinical Cancer Advances 2016. For the past 10 years, ASCO has been producing this annual report. Earlier this year ASCO asked advocates and survivors to share how advances in research impacted their lives. You may read the report here.  I was honored to have my story chosen to appear in this year's report . You may find it on Page 41 ( 43 in a pdf reader).

Every Day is a Blessing!