Ovarian cancer national alliance

MIOCA NEWS

MIOCA in the news:

Ovarian Cancer Survivor Aims to Raise Awareness

MIOCA volunteer, Deanna Cosens, works tirelessly to educate and raise awareness of ovarian cancer.  Deanna was interviewed as part of a special series on cancer patients who give back.  Through this article and video , Deanna continues to educate the Detroit area.

Spartans Come Together to Support MIOCA

On WXYZ, WGVU - Family Health Matters , WDET - The Craig Fahle Show , 1290 WLBY - The Lucy Ann Lance Show , WEMU, 107one - The Martin Bandyke Program, WTKA Sports Talk 1050 - The Michigan Insider, U of M Nursing School website , Ann Arbor.com , Observer & Eccentric,  Rochester Post , Northville Record , Detroit Free Press , MLive , Detroit Jewish News , WZZM13 , WXZY  and Sunday Edition on: WXYT-FM & AM, WOMC-FM, WYCD-FM, & WDZH-FM

Read about MSU alumni director, Scott Westerman, challenging Spartan faithful in response to “Go Blue” over MSU stadium, raising thousands of dollars for the Michigan Ovarian Cancer Alliance: Detroit Free Press , Mlive  and more on the news page.

 Ovarian Cancer National Alliance Annual Conference

This year’s conference in Washington DC marked the 15th anniversary of the Alliance and MIOCA Vice President Marcie Paul attended. The 4-day national event featured informational sessions on clinical trials, research updates, drug shortages, genetics, Healthcare Reform as it relates to cancer patients and much more. One of the many highlights was high school student Jack Andraka, winner of the Intel International Science and Engineering Fair, discussing his award-winning test for ovarian cancer detection. The conference concluded with a full slate of Advocacy Day meetings on Capitol Hill. Marcie met with several Michigan and Indiana legislators, including Senator Debbie Stabenow.

View conference materials and read more about the topics, speakers and Advocacy Day meetings in EVENTS (scroll down to PAST EVENTS).

Meeting with Senator Stabenow's Staff

Alex Scheff, Senator Stabenow’s Health Policy Legislative Assistant made his annual visit to Michigan last month to meet with a select few constituent groups, which included MIOCA. Pam Dahlmann, Marcie Paul, Peggy Pitt and Terrie Karebian represented us at the meeting. Barb McCallahan, Senator Stabenow’s Director of Community Affairs also attended. Several issues of critical importance to women with ovarian cancer were discussed. This included federal research funding and the national shortage of some life saving medications (chemotherapy and anesthesia) required to treat ovarian cancer.

One legislative attempt to help mitigate the drug shortages is the reauthorization of the Prescription Drug User Fee Act, which Congress passed at the end of May and Senator Stabenow supported. It has new provisions that improve the FDA’s inspection process for foreign manufacturing facilities and calls for advance notice of potential shortages. However, we discussed how some problems would likely remain and that it is important to keep attention on the issue. For this reason we will continue to work with the Alliance and the American Cancer Society to ensure government responsiveness, but we need your help. Please continue to tell your legislators how these shortages are threatening patient care and by sharing your story with us, we can help make sure Congress hears your voice.

Regarding research funding, we thanked Senator Stabenow for responding to our call to sign onto the Menendez-Snowe letter requesting an increase in DoD funding for FY 2013. But we also talked about the need to continue to contact Congress throughout the appropriations process to ensure the final budget contains the $20 million funding level.

Alex indicated that Senator Stabenow would again sponsor a resolution designating September as Ovarian Cancer Awareness Month. We are very appreciative of this, as well as the opportunity to meet with her staff and hear our concerns.

MIOCA on the air

MIOCA Vice President, Marcie Paul recently appeared on WGVU’s Family Health Matters, which aired in the western Michigan area following the documentary, “The Whisper: The Silent Crisis of Ovarian Cancer”.  WGVU is a PBS affiliate located in Grand Rapids and for more than a decade, Family Health Matters has offered an in-depth examination of health issues affecting people in western Michigan. The half hour television show, with host Shelley Irwin, covered several topics related to ovarian cancer ranging from survivorship issues to the challenge of early detection. It provided a valuable forum for increasing awareness about this deadly disease and MIOCA’s efforts to fight back.

TEAL OUT benefits MIOCA

We are immensely grateful to the St Mary Catholic Central High School and Airport High School Interact Clubs for organizing a massive TEAL OUT at their recent basketball game. Many thanks to Ray Lauers of St Mary’s and Gail Meyer of Airport for their leadership as well as the basketball teams and entire community for ice cream social, raffle and t-shirt sales that benefited MIOCA. We were honored to be presented with the donation at halftime of this spirited rivalry.

Thank you and Go Jets, Falcons and Team Teal!

Heaven’s Newest Little Angel

MIOCA deeply mourns the death of 8 year old Mariel Almendras. She was diagnosed with Sertoli-Leydig ovarian cancer in 2009 at the age of 6 and was taken from us on Thanksgiving Day.  
Mariel first brought joy to MIOCA when she helped during our first Turn The Towns Teal campaign for National Ovarian Cancer Month. She had many dreams to advance ovarian cancer treatment, awareness and fundraising. We hope to make them a reality for her and all of our fallen heroines. Please join us in supporting Mariel’s family with prayers and continued ovarian cancer awareness.

Read more about Mariel.

Thank you for Swimming for a Cure

MIOCA sends a special thanks to the Dundee Varsity Girls Swim Team for the tremendously successful fundraising effort, “Swimming for a Cure”. Leading the effort were Baleigh Schuler, in honor of her mother and ovarian cancer survivor Janet Schuler, in addition to Co-captains Brooke Edwards and Hailey Buhl and their parents. MIOCA salutes them; they are all champions both in and out of the water!

News

MIOCA Turns the Village Teal to raise awareness - as seen on WXYZ

(WXYZ) - September is National Ovarian Cancer Awareness month.

Each year, the Michigan Ovarian Cancer Alliance "Turns the Village Teal" to raise awareness about the disease.

There's still time for you to sign up for this year's event.

The alliance's president Pam Dahlmann and board of directors’ member Michelle Shepherd joined us on 7 Action News This Morning on 20 to talk about the effort.

You can watch the entire interview here

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Shake Your Teal Feather to fight ovarian cancer

(NEWSCHANNEL 3) - Grab those sneakers and bust out your teal clothing because next weekend is the Shake Your Teal Feather Fun Run/Walk to fight ovarian cancer.

The fundraiser, benefitting the Michigan Ovarian Cancer Alliance, is Saturday at 2 p.m. at the John Ball Park Zoo in Grand Rapids.

Organizer Drew Parker talked about the event and the need to become involved.  Listen to what Drew has to say about the event and why he works with others to create a great day for attendees.  Register now for Shake Your Teal Feathers!

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Locals turn Northville teal to raise awareness

Northville residents Terrie Karebian and Vicky Van Gorder have different stories in getting diagnosed with ovarian cancer, but they share the same battle to raise awareness and help others. To get the message out they kicked off Ovarian Cancer Awareness Month a little early and participated in the Michigan Ovarian Cancer Alliance / Turn the Towns Teal (R) event by wrapping teal-colored ribbons on light poles around downtown Northville. “We want others to have a better understanding of the symptoms of ovarian cancer and its diagnosis,” said Karebian on Aug. 18 before placing the ribbons along Main and Center streets. “It’s important to us on a very personal level and that’s why we are here today to begin raising even more awareness.”  Read full article here .

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Calling all volunteers...Teal Ribbons coming to a neighborhood near you!

Once again MIOCA is partnering with Turn the Towns Teal to raise awareness during National Ovarian Cancer Awareness Month.  Survivors and MIOCA supporters will be tying teal ribbons in many cities and towns across the state.  Pam Dahlmann, MIOCA president, states, "It is so important we make the most of this opportunity to educate and raise awareness of ovarian cancer.  For thirty days each year, we want a sea of teal."  The teal ribbons often provide a catalyst for conversation as people on the street ask for more information.  To tie ribbons in your area, please click here  to see the schedule and contact information.

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Webinar for Michigan Primary Care Asociation gets positive reviews

MIOCA is proud to have partnered with Dr. Carolyn Johnston, U of M gynecologic oncologist, and Ann Garvin, Michigan Dept of Community Health nurse consultant, on July 16 to educate primary care physicians about ovarian cancer.  The webinar received very positive reviews! Learn more about ovarian cancer by listening to the webinar .

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Oral Drug Combination May Be Highly Effective for Recurrent Ovarian Cancer

Significant improvement with the use of a combination drug therapy for recurrent ovarian cancer was reported at the annual meeting of the American Society of Clinical Oncology meeting in Chicago. “Of particular note is the fact that both drugs used in this trial are in pill form and could offer an alternative to intravenous chemotherapy,” said Percy Ivy, M.D., associate chief of NCI’s Investigational Drug Branch.  Read more here

SGO & AACR Research News

Two major scientific conferences, the Society for Gynecologic Oncology (SGO) and the American Association for Cancer Research (AACR), recently completed revealing a wealth of scientific research news about ovarian cancer. Read a summary of the highlights here.

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Advocates' Hard Work Pays Off in Research Funding

The appropriation bill Congress recently passed for this fiscal year contains some good news for the ovarian cancer community. It allocates $20 million for the Ovarian Cancer Research Program - the amount the Alliance and our 6 MIOCA advocates requested from their legislators at Advocacy Day meetings last summer. CDC cancer control and awareness programs also received robust funding. Plus funding for both the National Institutes of Health and National Cancer Institute--which typically fund around $100 million in ovarian cancer research yearly--will rise by around 3%.

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Altered Estrogen Metabolism and Ovarian Cancer

Eleanor Rogan, Ph.D., University of Nebraska College of Public Health, believes that epithelial ovarian cancer is initiated by an imbalance in estrogen metabolism. In a study funded by the U.S. Dept of Defense Ovarian Cancer Research Program, UNMC researchers suggest physicians might be able to predict ovarian cancer in the near future based on measuring this imbalance.

Read more here.

Conflicts of BRCA Screening

While most survivors wonder why they developed ovarian cancer, for those who carry the BRCA genetic mutation, it helps to know there is a strong possibility this is the cause. Yet it raises many other questions and concerns for the future generations. Read more  about the questions, difficulties, and conflicts in areas such as Israel where the highest populations of these genetic mutations reside.

Drug Quality and Security Act

Congress has approved the Drug Quality and Security Act and it’s now on its way to the White House for signature.  The Drug Quality Security Act means safer compounded drugs and greatly diminishes the risk of counterfeit drugs making it into our homes.  It establishes a system to track and regulate compounded drugs from manufacturing to distribution.  The Alliance has been working on this issue in a coalition led by Pew Charitable Trusts. More information here .

Doxil Shortage, Again

The main supplier of Doxil has decided to close their plant and discontinue production of the drug. Johnson & Johnson, the distributor, said it therefore is likely the Doxil shortage will continue through the end of 2014.  Due to FDA approval process, it is doubtful that Johnson & Johnson will have a new supplier before the end of 2014.  More information for patients and families can be found here.

Information to help determine new insurance coverage

Enrollment for the Health care Marketplaces opened on October 1st (with coverage starting January 2014).  The options for insurance for cancer patients can be overwhelming, so the Alliance created a checklist to help when researching coverage in the marketplaces. The Checklist was created with cancer patients' needs in mind to ensure all bases are covered when comparing health insurance plans.

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Spartan’s alum responds to Go Blue by raising funds to fight ovarian cancer

MSU Alumni Association Executive Director, Scott Westerman, issued a challenge to the Spartan faithful after “Go Blue” appeared over their stadium last Saturday. Saying the money spent on that flight could have been put to better use, he challenged Spartan's nationwide to exceed that amount in donations to the MIOCA .  Scott's wife, Colleen, is treated at University of Michigan Hospital for ovarian cancer, and he will challenge his counterpart at the UMAA to do the same, "Let's show the world what Leaders, Lifesavers and World Changers do".

The response has been tremendous. We are greatly appreciative of Scott & Colleen and everyone that has donated! We will use these funds to further our mission and help save women’s lives. Thank you from the MIOCA Board, volunteers, and all ovarian cancer survivors! ,

Some of the press: MLive , CBSSports , Detroit Free Press , MLive , ESPN , Fox News , Examiner , Detroit News , WLNS TV , USA TODAY , Huffington Post and more!

Promising New Research Results For Early Detection Screening

MD Anderson Cancer Center published new findings indicating that evaluating the change in CA125 levels over time shows some promise as a screening method for early ovarian cancer. The 11 year long study followed 4,000 low risk women that underwent yearly blood tests for the CA125 cancer marker. Those that showed a sudden increase were referred to a gynecologist and received an ultrasound. The study suggested that the testing strategy had a specificity of 99.9 percent, the researchers said, meaning that only 0.1 percent of patients without cancer would be falsely identified as having the disease. Read more here.

Research Report from ASCO 2013

The Alliance leadership recently attended the American Society of Clinical Oncology (ASCO) annual meeting, an event that annually gathers thousands of cancer researchers from around the world. Many new studies on or related to ovarian cancer were presented at this year’s meeting and were summarized by the Alliance. Read the summary  here as well as some other relevant research presented at the meeting.

Supreme Court Strikes Down BRCA Gene Patents

The Supreme Court ruled unanimously on June 13 that private companies do not have the right to patent human genes, including those associated with an increased risk of ovarian and breast cancer - the BRCA1 and BRCA2 mutations. Many cancer advocates applauded the decision, in the hope it will allow for easier, less expensive access to genetic testing, and  more research to be done on these genes.

Read the statement from the Alliance .

Read the New York Times story .

Society of Gynecologic Oncology 2013 Annual Meeting

At this year’s SGO Annual Meeting numerous presentations explored issues related to ovarian cancer. The Alliance summarized some of them, with topics including diagnosis, treatment, recurrence, prognosis and more, in a report here.  

International Study Discovers New Genetic Markers for Cancer

A collaboration of more than 130 institutions analyzing data from more than 200,000 people revealed new genetic markers for breast, prostate and ovarian cancer.

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The New York Times reports on study finding inadequate care for ovarian cancer

The New York Times  reported on a study presented at the 2013 meeting of the Society of Gynecologic Oncologists that found most women with ovarian cancer do not receive adequate care or treatment. This study, from the University of California, Irvine, found women are more likely to get optimal care when treated at a medical center that handles a high volume of ovarian cancer cases.

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Possible Link Between High Blood Calcium Levels and Ovarian Cancer

The Wake Forest Baptist Medical Center reports that high blood calcium levels might predict ovarian cancer. The study found, “women who were later diagnosed with ovarian cancer and women who later died of ovarian cancer had higher levels of calcium in blood than women who did not before their cancer diagnosis.”

Read report here.

Pap Test Might Detect Ovarian Cancer

Researchers at Johns Hopkins showed that examining cervical cells can help identify ovarian and uterine cancers. In a recent small study of 46 women, DNA analysis detected 41% of ovarian cancer cases.

Read study here.

Metformin may increase ovarian cancer survival

A retrospective, case-control study at Mayo Clinic, found the diabetes drug metformin may increase survival in women with ovarian cancer. It reported that ovarian cancer patients with diabetes taking metformin during treatment had a 4 times greater 5-year survival rate, compared to non-diabetic ovarian cancer patients not taking the drug. Abstract here .

Supreme Court to hear case against BRCA1 & BRCA2 patents

The Supreme Court will hear arguments challenging the patents of 2 genes associated with breast and ovarian cancer - the BRCA1 and BRCA2 genetic mutations, which are currently owned by Myriad Laboratories. The lawsuit charges the patents stifle diagnostic testing and research that could lead to cures and limit a woman’s medical options. The Alliance has joined the suit; the ACLU and Public Patent Foundation first filed it in 2009.

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Tell Congress to prevent harmful cuts to ovarian cancer programs

If Congress does not act soon, we will see across-the-board cuts to programs that are crucial to fighting ovarian cancer. These automatic cuts, called sequestration, will decimate programs that play an essential role in research to fight and prevent ovarian cancer. Read more about what you can do.

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NIH study uncovers new mechanism of action for PARP inhibitors

A National Institutes of Health (NIH) study revealed a significant new mechanism of action for the class of chemotherapy drugs known as PARP inhibitors. It also identified differences in the toxicity of 3 drugs in this class, which are involved in some current clinical trials. PARP inhibitors appear to be promising anticancer agents for ovarian cancer.

Read the article here

Study Shows Few Women Recognize Symptoms of Ovarian Cancer

A study conducted by the Centers for Disease Control and Prevention showed that women were not aware of the non-gynecologic symptoms of gynecologic cancers, such as abdominal or back pain. Therefore, women did not recognize the urgency of seeking care.

Read the abstract here

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Drug Shortage Update: Janssen Announces End of Doxil Shortage

Janssen Products, LP announced it has restored full access to Doxil® (doxorubicin HCl liposome injection) supply for physicians and their patients in the United States. “This is encouraging news for women with ovarian cancer and their health providers.” said Calaneet Balas, Chief Executive Officer of the Ovarian Cancer National Alliance. Throughout the past year, the Alliance has worked with stakeholders—including FDA and the drug industry—to resolve current drug shortages and prevent future problems.

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Genetic Analysis of Breast Cancer Reveals Similarities to Ovarian Cancer

A comprehensive genomic study of breast tumors has identified four genetically distinct types and revealed that mutations found in triple-negative breast cancer more closely resemble ovarian cancer than other breast cancers. The federally funded Cancer Genome Atlas Network  found basal-like breast tumors showed many molecular similarities to high-grade serous ovarian tumors. The findings might help shed light on why PARP inhibitors appear to be promising in the treatment of both ovarian cancer and HER2+ breast cancer , as well as BRCA -associated breast and ovarian cancers.

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Drug Shortages Easing But Underlying Problems Persist

With the FDA documenting shortages of 20 chemotherapy drugs, including Doxil, paclitaxel, cisplatin and others, it is well known that ovarian cancer patients have been acutely affected. A new report indicates that this drug shortage crisis appears to have eased somewhat from last year, thanks in part to federal regulatory interventions early this year.

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Dose Dense Therapy Appears Beneficial

A study of 637 Japanese women with ovarian, fallopian or primary peritoneal cancer showed that dose dense paclitaxel-plus-carboplatin chemotherapy provided a benefit.

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Survey to help Influence Future Ovarian Cancer Research

The Ovarian Cancer National Alliance is partnering with the Society of Gynecologic Oncology (SGO) on a first-of-its-kind survey for women with ovarian cancer. Your input will help the Alliance and SGO better understand the patient perspective on outcomes from clinical research and could help shape future research.

We urge all ovarian cancer survivors to click here to complete the short survey . We want to know which endpoints are meaningful to you, and what impact various side effects have on your quality of life. This information could influence how ovarian cancer drugs are evaluated, approved and covered in the future.

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Higher Social Attachments Associated with Survival Advantage in Women with Ovarian Cancer

According to a study published in the Journal of Clinical Oncology, women with ovarian cancer that have high levels of emotional support live longer than women that do not. The study also suggests that a high degree of “instrumental social support” – that is, reflecting the availability of tangible assistance – did not have any effect on survival.

Read the abstract here.

Michigan Ranked 28th in US on Provision of Care to Ovarian Cancer Patients

First-of-Its-Kind Report Card Evaluates All 50 States and District of Columbia

The Ovarian Cancer National Alliance released a report identifying four categories essential for quality care for women with ovarian cancer. It ranks all 50 states and the District of Columbia on their provision of such care. Michigan was ranked 28th overall, based on the environment it provides for women with ovarian cancer. Ovarian Cancer: A Call for State Action urges legislators and advocates to work together on improving care for women with ovarian cancer in their communities.

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Supreme Court Ruling Ensures Healthcare Coverage for Women with Ovarian Cancer

The decision on the constitutionality of the Affordable Care Act, upholds many critical patient protections. It means that women with ovarian cancer will continue to benefit from the elimination of lifetime and annual benefit limits and prohibitions on denying coverage due to pre-existing conditions. More about how this decision benefits women with ovarian cancer and their families can be found here .

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NCCN PUBLISHES NEW TREATMENT GUIDELINES

The National Comprehensive Cancer Network (NCCN) just published three updated ovarian cancer guidelines. The guidelines are based on research evidence from clinical trials and other studies. They are developed by oncologists from an alliance of twenty-one highly respected cancer centers and are one component of a physician’s treatment recommendations for a patient.
The NCCN guidelines also can affect insurers’ decisions about coverage. Women with ovarian cancer should be aware of the just published changes as they may result in adjustments to insurance coverage. See more here :

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Olaparib shows improvement in PFS but not OS, So Far

Olaparib, a PARP inhibitor, showed a 3.6 month improvement in progression free survival (PFS) in women with platinum sensitive recurrent ovarian cancer. However, based on the interim analsis, there is no significant improvement in overall survival. PARP inhibitors are presumed to work particularly well for patients with a BRCA mutation, however BRCA status was not required for enrollment in this trial.
See full article here

Patient Advocates Encouraged That Ovarian Cancer Trial Will Advance, Thanks to FDA Approval to Re-Import Doxil®

Washington, DC—Endocyte, Inc. announced today that is has received approval from the Food and Drug Administration (FDA) to re-import supplies of Doxil® from Europe for use in the company’s PROCEED Phase 3 trial. The PROCEED trial is a clinical trial for women with folate-receptor positive platinum resistant ovarian cancer. Enrollment in the trial had stopped due to the ongoing, worldwide shortage of Doxil. More information about the PROCEED trial is available at www.clinicaltrials.gov .

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Study Argues for Increased Use of PARP Inhibitors

A study from the Oregon Health & Science University suggests that women who have a recurrence of ovarian cancer would benefit from PARP inhibitors, now being tested in women with hereditary ovarian cancer. The study enrolled women with non-hereditary ovarian cancer, also called sporadic ovarian cancer. The women who had a recurrence were more likely to have certain genetic mutations, including PARP mutations. This suggests that more women than just those with a BRCA mutation would benefit from treatment with a PARP inhibitor.
Read the abstract here

reprinted from OCNA