group photo
August 2010
NCCC ONLINE NEWSLETTER
Dear NCCC/GIAHC Members:

HPV is the world's most common sexually transmitted viral infection of the reproductive tract. HPV infects an estimated 660 million people per year. It causes almost all cases of cervical cancer, 90% of anal cancers and 40% of external genitalia cancers. HPV can also be a co-factor in some cancers of the oral cavity and orotharynx.
 
Your active involvement in helping us communicate this information to enhance awareness and education on this topic is appreciated a great deal by us at NCCC/GIAHC. Mostly, it will impact the cancers you can help STOP. HELP US SAVE LIVES!
 
And the exciting part of helping fight these HPV-associated cancers is that there are prevention tools that can be implemented globally to STOP these cancers before they invade the lives of families. Early cervical cancer detection screening and vaccines can both be utilized to help us all have a win in the war against cancer.
 
PLEASE consider making a donation to the NCCC and let's work together to STOP this Cancer! Please help today!!!
 
Warm Regards,
 
akayeMr. Alan Kaye
NCCC/GIAHC Co-Founder and Chairman
www.nccc-online.org  
www.GIAHC.org

HPV Status Can Predict Outcome in Oropharyngeal Cancer
Adapted from the NCI Cancer Bulletin, vol. 6/no. 11, June 2, 2009

Patients with advanced forms of a cancer in the upper portion of their throat have better outcomes if their tumors are positive for the human papillomavirus (HPV), according to new data from a phase III clinical trial presented at the 2009 annual meeting of the American Society of Clinical Oncology. (The findings were subsequently published in the July 1, 2010, issue of the New England Journal of Medicine; see the journal abstract.) Although other studies have suggested a link between HPV status and outcome in patients who have oropharyngeal cancer, these new data provide the most definitive evidence, said the study's leader, Maura Gillison, M.D., Ph.D., of Ohio State University, at a press briefing before the meeting.

Oropharyngeal cancer "can now be divided into those linked to prolonged use of tobacco and alcohol, and those linked to HPV," she said. And determining HPV status, she added, "may now be part of routine clinical care...because of its prognostic implications in these patients."

The findings come from a correlative study in the Radiation Therapy Oncology Group (RTOG) 0129clinical trial, a phase III trial in which patients with stage III or IV oropharyngeal cancer were randomly assigned to receive different regimens of radiotherapy and the chemotherapy drug cisplatin. Nearly two-thirds of the tumor samples tested HPV positive, Dr. Gillison said. Two years after treatment, 88 percent of the HPV-positive patients were still alive, compared with 66 percent of the HPV-negative patients. The absolute difference in survival increased over time.

Additional analyses ruled out other factors, such as age, performance status, and treatment, that might account for the superior outcomes seen in patients with HPV-positive tumors.

Due to the dramatic differences in treatment response, Dr. Gillison said, from this point forward RTOG and the Eastern Clinical Oncology Group will stratify all of their clinical trials by HPV status, and they will design clinical trials specifically for HPV-positive or -negative patients.
GIAHC Attends HPV 2010 Conference in Montreal
The International Papillomavirus Society convenes every year to discuss progress in the field of HPV. This year the conference (HPV 2010) was held in Montreal from July 3rd-July 8th. Nearly 2000 delegates attended the conference. Our very own Dr.Shobha Krishnan, Founder and President of the Global Initiative Against HPV and Cervical Cancer (GIAHC) and member to the Medical Advisory Board of NCCC gave two presentations at the conference. Here are the links to her talks:
 
Women Against Cervical Cancer session: "How to Work with Women in the Community" http://www.wacc-network.org/wacc2010/forum/HPV-2010.pdf
 
Capacity Building: http://hpv2010.org/main/index.php?option=com_conference&view=presentation&id=881&conference=1&Itemid=102

 

In this picture you see Dr. Krishnan receiving an award for Best Overall Presentation in Capacity Building during the closing ceremonies at the HPV 2010 conference in Montreal.
NCCC Members in Action
On July 10th and July 17th the NCCC Louisiana Chapter held a Clear Your Clutter for Cervical Cancer Garage Sale in Lafayette and Baton Rouge. The NCCC LA Chapter handed out business cards, bracelets, cancer sucks buttons and literature about HPV and cervical cancer.

Denise Linton, NCCC LA Chapter Leader, would like to thank all her friends for donating the articles for the garage sale. Also much thanks to her family, friends and neighbors- especially the children and well-wishers for making the NCCC LA Garage Sale a huge success.





GIAHC in Action
The Global Initiative Against HPV and Cervical Cancer (GIAHC) is trying to develop a model program for cervical cancer screening in rural India. If this model is successful, it can be adapted by several other rural areas around the world. Dr. Krishnan just returned from a trip to Kutch. Details of the program can be viewed at http://giahc.org/volunteer-abroad/our-programs.html


Shobha Krishnan, M.D, meeting with health educators in Kutch
(a remote district in India) during her visit earlier this month.



Women dressed in their best clothes to attend the meeting


Lunch with health educators
New NCCC Chapters



Florida Chapter

Shannon Smith

The reason Shannon Smith wanted to become the Florida chapter leader of the NCCC is because it is something that is very near and dear to her heart. Shannon was diagnosed with stage IIB cervical cancer, and in 2004 underwent a radical hysterectomy and had to have radiation and chemotherapy - which has forever changed her life. Shannon promised herself after treatment that she would do something to help out other women to not have to go through the same terrible physical, emotional and heartbreaking experiences that she had. She feels that becoming a chapter leader is really a huge opportunity for her just to do that. Shannon feels cervical cancer is a completely avoidable cancer with preventive care like pap smears. Unfortunately, some women do not even have access to this kind of care. She believes that if she can help educate women that she can empower them because Knowledge is Power!



Orange County, California Chapter
Patti Juric
More than 11 years ago, Patti Juric found herself facing some tough choices, ones that someone aged 27 doesn't typically have to consider. Faced with a diagnosis of HPV and cervical cancer, Patti had to decide between having a hysterectomy or going against protocol and having a LEEP procedure in an effort to preserve her fertility. Choosing the LEEP, she worried what this meant for her future and the uncertainty this presented. Worrying year-after-year that her HPV would return along with the cancer, she decided that there had to be some way for her to reach women and warn them about this preventable disease, HPV. Upon finding the National Cervical Cancer Coalition (NCCC), she discovered a sisterhood and an avenue for speaking and sharing her story. Having endured a bittersweet year of joy and loss, Patti only further dedicated herself to cancer eradication, stepping up as the NCCC Orange County, California chapter leader. In January 2010, she gave birth to her third child, a daughter, Keely. The joy was short lived when her father was diagnosed with terminal pulmonary fibrosis in February 2010, followed by her mother's diagnosis of terminal, Stage 4 small-cell lung cancer. They both passed a day apart in June 2010. As the NCCC Orange County, California Chapter Leader, Patti intends to fulfill the promise she made to her parents to help fight cancer and teach people how to advocate for their health and rights as patients. Through the NCCC she hopes to raise HPV awareness on a community level by educating parents about prevention, as well as discussing vaccination when appropriate, not to mention, teaching women how to advocate for the health and treatment. Some of her initiatives include partnering with local hospitals and OB/GYN offices to develop resource goodie bags for newly diagnosed patients. 

 

Michigan Chapter

Claudia Negrut
Claudia had always thought she was invincible, that nothing bad could happen to her. And so, after postponing a PAP test for almost 6 years, at the age of 25 she was diagnosed with severe dysplasia (CIN III/CIS). She had a LEEP procedure which produced clear margins and a normal PAP four months after. Her experience made her
realize that we can never be too careful when it comes to our own health. She was mad at herself for being so ignorant regarding HPV testing and consequences. She didn't know what the virus was or what it could do to a woman's body until she found out she had it. Claudia wanted to start the NCCC Michigan Chapter because she is sure that there are many girls out there who, just like her, are not properly educated in safe sexual practices and gynecological problems. Claudia wants to share her story with as many women as she can and raise awareness in the community against this horrible disease. Claudia feels that there are so many ways to prevent going through this ordeal and she would be happy to know that in some small way, she was able to help someone make the right choices.

 

If you are interested in starting a chapter in your area, please contact Rachel Biety at
rbiety@nccc-online.org or call the NCCC office at 818-992-4242 and we will get you on the right track to starting a chapter in your local community.
New GIAHC Chapter


We now have a chapter in India!

India Chapter

Liladhear Gada
(Nickname: Adha, which means father in Kutchi) 

Adha hails from a family of businessmen in Bombay who had their beginnings in the district of Kutch, Gujarat. Adha's uncle was an eye surgeon and on his retirement he decided to dedicate his services to Kutch by organizing Eye Camps. Unfortunately on his way to organize the first Eye Camp, Adha's uncle had a massive heart attack and died at the railway station in Mumbai. His family decided to continue on with his uncle's wish and they organized the Eye Camp in his memory in Kutch in 1973. The camp was literally an eye opener for Adha. He witnessed the void in medical facilities in rural Kutch. There were more than 125,000 eye patients and at least 15,000 that needed immediate cataract surgery. Adha and his late wife pledged at that time to devote maximum time away from business activities and to utilize it for eye camps and other philanthropic work. In 1983, Bidada Sarvodaya Trust, of which Adha was the trustee, started an Eye hospital and medical center. The center went on to add other specialties including, ENT, General Surgery, Orthopedic, Cardiac and Dental services. In 1998, a 15 bed rural referral hospitals started functioning at Bhojay. In their first cancer prevention camp, Adha was moved by the existing gynecologic problems like prolapse of the uterus fibroids, ovarian cyst, ovarian masses and more. These problems had remained unnoticed, unaddressed and untreated for more than a decade for many of these women. Adha has traveled to almost every village in western Kutch to talk to midwives about the implementation of these programs. During the past ten years, Bhojay Sarvodaya Trust has arranged around 40 gynecologic diagnostic and surgical camps where 25,000+ women have been examined and given free medicine and 2300 surgeries have been performed. Bhojay has become a unique center for gynecologic patients. Adha intends to develop Bhojay as leading rural center for the detection and prevention of cervical cancer. With the help of Kutch Mahila Vikas Sangathan (KMVS) an NGO and GIAHC (Dr. Shobha Krishnan and her team), Adha is confident that they will make progress in this field and bring the needed help to the women in their community.
NCCC Chapter Leader Spotlight
In 2007, my life changed. What was to be a routine doctor's visit to get a prescription renewal turned out to be so much more than I had bargained for.

I had to write to the Quebec Premier and to the Minister of Health just to get an appointment with a doctor. And what a doctor they found for me. She was so amazing - and she decided to take me on as a regular patient. So, of course, there came lots and lots of tests, blood work. You name it, she signed me up for it.
Months later, the phone rang on a Thursday evening, it was the doctor stating that something was odd with my PAP results and wanted me to see another doctor. After that visit, and a trip to the operating room for a not so routine colposcopy I was asked to rush back to the hospital for a meeting a few days later. I knew something was wrong but never thought it would be cervical cancer. Leaving his office, I was in shock. Tears flowed from the hospital all the way home. Trying to dry my eyes all while driving home, it was difficult. The first place I started looking for information was, like so many of us, the internet. This is where I came across the NCCC. I sent off an email, and a few days later I received a Priority Mail envelope from them with all kinds of facts and information.

I must say, I was ignorant about HPV and cervical cancer up to this point. After three more trips to the operating room, a total hysterectomy, six weeks of low dose external radiation and 40 hours of high dose internal radiation - I felt that the most productive information I had received was from the NCCC and not from the hospital where all these operations and treatments were given. The NCCC also gave me the opportunity via their website to communicate with other women who had or were going through the same thing - this helped me cope with my situation.


I wanted to give back to the organization - however, having lost my employment due to the cancer, and having very limited funds, financial support was not an option for me - but I knew I could get the word
out about HPV and cervical cancer. Coping with cancer was very difficult, but if I can help save just one woman from going through everything that I did, I have reached my goal.

Being a chapter leader, I have met so many wonderful people, and I stay in contact with many of them
via Facebook and email. We are a true sisterhood. I tell everyone my story. It's a way to get their attention, and make them realize it could happen to them as well.

And I have found that sharing my creativity is also a great conversation opener. I sell my crafts, and with each sale, a portion of it is donated to the NCCC. Again, this is another way I can help in a very small way. You can visit my FB store at: http://tinyurl.com/kcreatefb and my NCCC FB page is available at: http://tinyurl.com/qcnccc
UPCOMING EVENTS
NCCC Southwest Chapters
Dallas/Fort Worth, TX
August 28-August 29, 2010
The Dallas/Fort Worth, TX NCCC Chapter will be participating in the 2010 Women's Expo. There will be numerous exhibitors whose goals are to get the women of the DFW area interested in their products and/or organizations. This is going to be a great way to get the word out about the new DFW NCCC Chapter and awareness to the community. Stop by our booth and say hello! For more information on the expo please visit:
http://www.adjuvantexpos.com/visions/
Location: Dallas Market Hall, Dallas, TX

Tuesday, August 31, 2010

BlackFinn American Saloon has graciously offered to host the Dallas/Fort Worth, TX NCCC Chapters Fundraiser in order to educate people about HPV and cervical cancer, raise money and have FUN! For more information or tickets please contact Michelle Dearing at fishprincessmissy@gmail.com.

Location: BlackFinn American Saloon, 4001 Bagpiper Way, Ste 101, Arlington, TX 76018
 
NCCC Southern Chapters
North Carolina
October 22, 2010, 5:00 PM-11:30 PM
The Brides Ball is an event to help create awareness of cervical cancer and raise funds to be donated to the
National Cervical Cancer Coalition. We invite you to wear your wedding dress or tuxedo again, and re-live the wonderful memories of your wedding day, whether it was recent or years ago! There will be door prizes, auction items, entertainment and on-site portraits! For an additional fee, you and your sweetheart can even renew your vows! Fun for everyone! Early bird tickets before September 1, 2010 are $65.00. For more information please visit: http://bridesball.eventbrite.com/
Location: New Bern, NC
 
NCCC International Chapters
Quebec, Canada
Saturday, August 21, 2010- 10:00am - 3:00pm
Exhibiting at the Lennoxville Street Festival. Portion of the sales of all Karen is Creative items will be donated to the National Cervical Cancer Coalition
 - Come out and see the creations, talk about cervical cancer awareness and take home one of Karen's beautiful creations. For more information please email Karen at keryou@nccc-online.org.
Location: Queen Street - Between College and Academy Streets, Sherbrooke, Q

To find local events in your area go to: http://www.nccc-online.org/community/chapters.html or contact the NCCC at info@nccc-online.org 
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