Tears and Laughter: Profoundly Memorable events: 10 yr history of Ovarian Cancer Get Togethers

 Background of Events:

Although many of these ovarian cancer women (listed below) were diagnosed at different times and in different places, they had one thing in common - ovarian cancer. That was the foundation. They were preceded by many magnificent ovarian cancer women most of whom are not with us today. 


It is truly amazing that ~20 years ago ovarian cancer women had a large struggle to connect with each other.  and I often think of Cindy M. when I say this.

These ovarian cancer survivors were part of a small (in context)  'barrier-free', international and inclusive network, and today, extended and expanded groups.  It is hard to imagine that the original meeting place was a (small) online listserve (no pics, no videos, no music - just ovarian cancer). It is also difficult to imagine life today without FB or Twitter but it did exist and well.  These ovarian cancer survivors became friends. But.... they had many friends. They made new friends and they lost many. This remains true today. These ovarian cancer communities are special place(s) known well to those who wish, if possible, to participate. These survivors do not necessarily have an interest in a particular event but they remain parts of a connection of the human spirit and a connection of the will to survive and survive as well as possible.

In 2006 a question was asked: if we had a weekend get-together would there be interest? 
There was a reason and a purpose behind this question. Those who were able, either physically or financially had been 'conferencing' for some years. But maybe we needed more? Maybe just for shopping, excursions and eating (of course!) and meeting new faces in new places. 

At these get-togethers we also spoke kindly and with concern about those whom we had lost, but also, our friends at home who could not join in for a variety of reasons - eg. treatments, financial etc..

My personal and most fond memory was when a Texan ovarian cancer survivor (Susie) said to her oncologist: "I am going to Canada for lunch!".

And so it began. Some events were small gatherings and some were large (IL./Helen) but all with lasting memories and bonds. What more through a lifetime can we ask of our communities?

To this day, I wish everyone to know of your sacrifices and your kindnesses to others who surround you. It is ingrained in you - I know this. That simply is why you are special. And that has nothing to do with events, except to say, that it has been a profound connection.

Sandi Pniauskas
1999 clear cell ovarian carcinoma
2012 urothelial (ureter) carcinoma
2014 small bowel resection (enteroenterostomy)
2015 invasive squamous cell (skin) carcinoma
Lynch Syndrome - MSH2


                          Facebook:  Ovarian Cancer Together!
 

1) 2006: Whitby, Canada (Sandi) 

2) 2007: Lincolnshire, IL (Helen) 

3) 2008: Annapolis MD (Annamarie)

4) 2009: St Louis MO (Yi) 

5) 2010 -

6) 2011: Branson MO (Ana Maria)

7) 2012: Kansas City, KS  (Debbie M and Carol T)

8) 2013: Louisville KY (Pat I)

9) 2014: Valley Forge PA (Annamarie)

10) 2015: Ft Lauderdadle FL  (Helen)

11) 2016 Bradenton FL  (Ana Maria)

video (9:15 min) Outcome of ovarian cancer patients was significantly improved with niraparib. ESMO 2016

(9:15 min) video

Dr Mansoor Raza Mirza - Copenhagen University Hospital, Copenhagen, Denmark

Dr Raza Mirza presents, at a press conference at ESMO 2016, the results of the ENGOT-OV16/NOVA trial.

They found that the PARP inhibitor niraparib significantly improved the outcome of platinum-sensitive recurrent ovarian cancer.
The trial met its primary endpoint, with niraparib considerably prolonging progression-free survival compared to placebo.
Read the news story or watch the interview for more.

PARP Inhibitor Broadly Active in Ovarian Cancer (Niraparib)

Medpage Today

Risk of CV Events in Coffee and Tea Intake : Cleveland Clinic Journal of Medicine + commentary

Cleveland Clinic Journal of Medicine

Risk of CV Events in Coffee and Tea Intake

Am J Med; ePub 2016 Sep 15; Miller, Zhao, et al

October 4, 2016
 

Moderate tea consumption slowed the progression of coronary artery calcium and reduced risk for cardiovascular events, a recent study found. Coffee and tea data were examined from 6,508 ethnically-diverse participants in the Multi-Ethic Study of Atherosclerosis with intake for each classified as never, occasional (<1 cup/day), and regular (≥1 cup/day). Researchers found:

• Participants who regularly drank tea (>1 cup/day) had a slower progression of coronary artery calcium vs never drinkers over a median follow-up of 5.3 years.

• There was a statistically significant lower incidence of CV events for >1 cup/day team drinkers (HR, 0.71).

• Regular coffee intake (>1 cup/day) was not statistically associated with coronary artery calcium progression or CV events (HR, 0.97), when compared to never coffee drinkers.

• Caffeine intake was marginally inversely associated with coronary artery calcium progression.

Citation: Miller PE, Zhao D, Frazier-Wood AC, et al. Associations between coffee, tea, and caffeine intake with coronary artery calcification and cardiovascular events. [Published online ahead of print September 15, 2016]. Am J Med. doi:10.1016/j.amjmed.2016.08.038.

Commentary: An article we reviewed about a year ago with over 4 million person-years of observations showed that increased coffee intake is associated with decreased cardiovascular disease, neurological disease, suicide and total mortality.¹ Other studies have shown coffee consumption to be associated with a decreased risk of type 2 diabetes, Parkinson disease, and fatal prostate cancer.² Now tea appears to have positive benefits on CV outcomes as well. —Neil Skolnik, MD

1. Ding M, Satija A, Bhupathiraju SN, et al. Association of coffee consumption with total and cause-specific mortality in three large prospective cohorts. [Published online ahead of print November 16, 2015]. Circulation. doi:10.1161/CIRCULATIONAHA.115.017341.

2. Ding M, Bhupathiraju SN, Chen M, van Dam RM, Hu FB. Caffeinated and decaffeinated coffee consumption and risk of type 2 diabetes: A systematic review and a dose-response meta-analysis. Diabetes Care. 2014;37:569-586.

Ovarian Cancer Get Together - 10 yr anniversary of (informal) ovarian cancer survivors meetups (U.S. & Canada)

call for particpants: Dr Patrick Lynch/MD Anderson/Citizens Advisory Council/LS

"CITIZEN ADVISORY COUNCIL" needed!

If you are interested in participating please contact Dr. Lynch and his research team by emailing them at:
familyconnect@mdanderson.org 
 
Please READ and SHARE!

Come be a part of changing the future for our LS families with Dr. Patrick Lynch and his research team at MD Anderson.
Many of you will remember our previous posts about the FamilyCONNECT questionnaire. (seen in the below post)
For those of you who completed the survey, thank you very much for participating. Your feedback has been invaluable to the researchers and will help determine changes to the family communication tool they are developing. Many of you have provided detailed comments and you now have a rare opportunity to be more involved as part of a "Citizens Advisory Council". You will have the opportunity to discuss your opinions with doctors and researchers to help refine the family connect tool including, reviewing navigation of the questionnaire, refining a user friendly website and to discuss further steps in the implementation. Our goal is to make this as user and family friendly as possible so YOUR personal input is incredibly valuable! Participants must have a willingness to be available for periodic conference calls or videoconferencing/WebEX. (help will be provided if you do not know how to do this, it's very easy)
If you are interested in participating please contact Dr. Lynch and his research team by emailing them at:
familyconnect@mdanderson.org
The FamilyCONNECT research team will contact you directly. Please feel free to include any opinions you have had about the tool and any additional information as to why you feel you would be a great asset to the team!
Thank you,
From All of Us at LSI
and
Dr. Patrick Lynch & The Research Team

eHealth Ontario - Open letter: Digital Health Assessment - Health Bulletin

Health Bulletin

 

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Open letter to Ed Clark

October 7, 2016
Further to our discussions, I am writing to seek your expert advice based on your experience in valuing public and private assets with respect to Ontario's digital health strategy.
As you know, over the last eight years, Ontario's health care system partners have worked steadily to establish a connected health information network with leadership from eHealth Ontario. eHealth was established in 2008 with a mandate to facilitate the establishment and maintenance of electronic health records for all of Ontario's residents. While the agency has encountered some setbacks and challenges, significant progress toward this goal has been achieved. Nearly all residents of Ontario who have interacted with the health system now have health records that are electronic. Most family physicians in our province have electronic medical records in their practices. In addition, nearly all hospital-based diagnostic imaging is now digital and key lab results are now available through a provincial information system
These systems have generated significant value for Ontario. In its 2015-16 annual report, Canada Health Infoway – the federal/provincial body charged with overseeing the use of innovative digital health solutions to improve Canadians' health – estimated that since 2007, digital health systems have produced an estimated $16 billion in benefits nationally . It is acknowledged that Ontario's share of the national benefits is substantial. In fact, a report prepared by CHI looking specifically at Ontario health technology accomplishments shows that the province is leading the country in several key areas.
Today, I am writing to you as the Premier's Business Advisor and Chair of the Advisory Council on Government Assets to assess and validate the value these systems have created for Ontario and to recommend ways to take them to the next level. Specifically, I am asking you to consider advising the government on two key issues with support from experts in digital health, as appropriate. First, I would ask you to provide the government with a value assessment of Ontario's digital health assets and all related intellectual property and infrastructure. Secondly, please provide us with recommendations related to how to maximize the value of these assets for Ontarians by improving how care is delivered, the patient experience in interacting with the health care system and, indirectly, through the economic value that is created for Ontario's economy. To inform the valuation, I would ask that you engage an international expert in digital health, such as Dr. John Halamka. In addition, please seek advice from the Information and Privacy Commissioner's Office of Ontario to ensure the protection of personal health information in all recommendations.
I believe there is growing opportunity in moving to a digital health care system. Consistent with the government's Digital Government plan, as announced in the 2016 Budget, our focus is shifting from providers to patients. We already have the infrastructure in place to connect and equip physicians, hospitals and other health care providers. Now, we need to focus on patient and consumer-focused tools and services that enable direct access to health information and improved care, such as accessing an individual's own health records, booking physician appointments online, keeping track of medicines, renewing prescriptions electronically, accessing services and advice remotely, and more. This is the direction that will serve emerging public and patient needs.
As the mandate of eHealth Ontario nears expiry at the end of December 2017, I feel now is the opportunity to renew our vision for digital health as part of our work to transform our health-care system into one that is truly patient-centred. Shortly, my ministry will be consulting with patients, health stakeholders and digital health experts about a new digital health strategy. But the full extent and value of our existing digital health assets must be fully understood if we are to move forward with a new vision.
I want to be absolutely clear that in the course of your work on digital health and your resulting recommendation(s), the protection of personal health information is paramount. Enormous energy, resources and intellectual effort have been dedicated to ensuring the integrity and privacy of people's personal health information. The purpose of this work is to better understand the value of our digital assets to help guide, in combination with the advice of other experts, Ontario's future digital health strategy.
I hope you will accept my request to lead this work, and would welcome your advice before the end of December 2016 so that we can assess this information in advance of the final year of the agency's current mandate.
Signed,
Dr. Eric Hoskins
Minister of Health and Long-Term Care

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Updates on Breast Cancer Genetics: Clinical Implications of Detecting Syndromes of Inherited Increased Susceptibility to Breast Cancer

abstract (paywalled)

Keywords:

hereditary breast cancer, genetic testing, panel testing, variant of uncertain significance, BRCA 1, BRCA 2, TP53, STK11, PTEN, CDH1, CHEK2, PALB2, ATM, BARD1, BRIP1, Mre11, Rad51, MUTYH, Li-Fraumeni, Lynch Syndrome, Cowden Syndrome, PARP inhibitor

Myriad's Test Identifies Patients with Ovarian Cancer Who May Benefit from Treatment with Niraparib

BioPortfolio.com

I'll Never Forget You - The Letters (write yours and submit) CBC

I'll Never Forget You - The Letters
 Saturday October 08, 2016


 We want you to write a letter of gratitude to that special health care person who touched your life -- or the patients that touched health-care workers' hearts.  
Patients, think of the doctor, the nurse, the health-care worker who you would like to thank.

For those on my side of the gurney, think of patient you would like to honour: the one who changed the way you look at health care.

Start the letter with:

Dear (BLANK), I'll always remember you because....

Then send it to whitecoat@cbc.ca. We'll take your responses, and make them into a special program. 

Paraaortic node recurrence 25 years after removal of epithelial ovarian carcinoma (stage 1 dx'd age 29 yr)

abstract
 
 In epithelial ovarian carcinoma, very late (more than 20 years) recurrence is an unusual event. In patients experiencing such a recurrence, the effectiveness of platinum/taxane chemotherapy has been questioned. A 54-year old woman presented with paraaortic node swelling that appeared 25 years after treatment of stage I epithelial ovarian carcinoma. She underwent a partial resection of the nodes and histologic examination showed high-grade serous carcinoma. She received paclitaxel and carboplatin chemotherapy and a partial response was initially observed on imaging studies; however, serum cancer antigen125 levels increased thereafter. She received radiation therapy to the paraaortic nodal disease with doses of 45 Gy and achieved a complete response. She was disease-free more than eight years after the detection of recurrence. In conclusion, radiation therapy may be an effective treatment option in patients with very late recurrence of epithelial ovarian carcinoma refractory to platinum/taxane chemotherapy.

Data in longitudinal randomised controlled trials in cancer pain: is there any loss of the information available in the data?

Data in longitudinal randomised controlled trials in cancer pain: is there any loss of the information available in the data? Results of a systematic literature review and guideline for reporting | BMC Cancer | Full Text

Background

According to the ESMO Guideline working group [1] over 80 % of cancer patients with advanced metastatic disease suffer from pain. A vast literature [2, 3, 4] reports the inadequacy of pain treatment among these patients despite numerous initiatives and recommendations [5, 6, 7, 8]. Therefore high quality trials assessing the efficacy of analgesic drugs and treatment strategies are required for this population of patients. Quality research includes optimally using all the data collected and analysing it an informative way i.e. using the statistical method which best reflects the effect of the intervention. Recently, it has been reported that there were numerous examples of waste in the running of clinical trials [9], non-optimal use of the data collected being one of them......

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