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CanSurvive Meeting Notes September 19, 2008

It was wonderful to meet again with each other and make new friends. Doris, Ruth, Terry, and Margaret were here for their first time. Margaret came on behalf of her sister, Mary.

Several of our members are still undergoing treatment or starting treatment again or having additional surgery, so you'll get an updated member list in the next week so we can all stay in touch.

Our September meeting featured 2 speakers: Jennifer Cherry with the Hope Lodge (930-8873) and Hilary Palmer with our local American Cancer Society (ACS). They told us about the main purpose of the ACS and the services they offer.

Some services include:

You can find out more by going to the ACS website http://www.cancer.org

One of the most important things to be gleaned from their presentation is there is help if you have a need during your treatment. You can contact the ACS directly (205-879-2242) or go through the social worker, Michael K. Schepps, at the UAB GYN Oncology office to start a referral.

Hilary from ACS told us more about the Look Good, Feel Better program that helps women one-on-one with skin care, makeup, wigs, scarves, and accessories during their cancer treatments. Cosmetologists provide the expertise. It includes free makeup and skin care products valued at over $300. Hilary’s phone number is 930-8870.

If you weren't able to attend this meeting, you can get ACS brochures at the UAB GYN Oncology office.

Our thanks to McAlister's for donating our great lunch and to the ACS for letting us use their facility monthly and for our speakers.

After our speakers' presentations, we did have time to share concerns and encouragement. It is so wonderful we have each other to lean on!

We didn’t have time to talk about this, but most of you wanted to stuff goodie bags again at a meeting. We’ll do that at our November meeting, so block out some extra time for that. And we will keep it simpler this year. We’ll take a few minutes to talk about it at our October meeting.

October 17: Our own Connie LaMonte will present a program on music and healing.

November 21: The Doubletree CARE committee will prepare a Thanksgiving meal for us. We will also stuff holiday bags.

December 7: Our Christmas party will be at the Hoover Lakehouse in the early afternoon.

December 19: We’ll have our regular meeting at the ACS.

2009

January meeting: Rashel Ross from the Rashel Foundation will be our speaker

February meeting: Mary Jerome, one of our chemo nurses, will be our speaker

New Quilt!

Care Notes

Hi, Ladies,

Hope you are doing well today! I wanted to remind you about some resources you have access to for yourself or to give other patients. We all know how great it was for someone to reach out to us, especially during the tough times.

I have some more of those pocket tokens and I'll bring them to our next meeting.

Someone asked about CareNotes today and I realized I never sent out the title list our support group has available. If you are unfamiliar with CareNotes, they are pamphlets on a wide range of topics to help folks get through a difficult period. The front corner says "Take One -- and take heart. Give One -- and give hope." I've found them to be very helpful for myself personally and find they are a good way to "reach out & touch someone". (You can go to their website to learn more: www.carenotes.com)

For CanSurvive, I ordered ones that are cancer-related. I will bring those to our next meeting along with some envelopes. Here are the ones we have:

Coping With Cancer Self-Help Assortment, which contains a colorful cover card and ONE EACH of the following FIVE tried-and-true CareNotes:,
What People With Cancer Need Most
Lifting Your Life Above Serious Illness
Living With Cancer A Day at a Time
Tackling the Emotional Side of Cancer
Finding the Courage to Face a Serious Illness

We also have these individual CareNotes: Dealing With the Anxious Waiting That Illness Brings(don't we all know how that feels?)
Hanging on to Hope Through a Serious Illness
Living With Cancer -- A Day at a Time
How It Feels to Have Cancer

In addition to CareNotes, we've obtained booklets for patients that are kept in the clinic in a display rack:
Ovarian Cancer Resource Guide - for newly diagnosed women
Ovarian Cancer Resource Guide - for women with recurrent disease
When a Loved One Has Ovarian Cancer
Ovarian Cancer - Sexuality & Intimacy
Understanding Ovarian Cancer
Understanding Endometrial Cancer
Understanding Primary Peritoneal Cancer
Understanding Cervical Cancer

Hope you have a good week!
Love,
Cheryl

CLINICAL RESEARCH TRIALS: Progress being made at UAB

Just recently, it seems much headway is being made in the way of ovarian cancer research and early detection. Even though this research has been taking place for years, we are, for the first time, feeling extremely hopeful that the answer to early detection is within the reach of the research community abroad. The Norma Livingston Ovarian Cancer Foundation is pleased to give our supporters an update on the progress of projects that you have helped generously support at the University of Alabama in Birmingham.

The first of these projects is the Serum Proteomics: For Detection of Ovarian Cancer Using the Correlogic Systems, Inc. Serome Pattern Blood Test™ System. This trial is evaluating a new serum-based test that looks for patterns of proteins that can be utilized for the detection of ovarian cancer. The researches as UAB have enrolled over 275 patients in this multi-center trial since its inception and are the leading institution with respect to patient accrual. They anticipate early findings from this trial to become available later this year. The foundation’s initial investment has also lead to an additional investment by Correlogics, Inc., to further extend the study. The second of these projects is a Phase I Study of a Tropism Modified Conditionally Replicative Adenovirus Vector (Ad5-D24RGD) for Intraperitoneal Delivery in Patients with Recurrent Ovarian and Other Selected Gynecologic Cancers. This is the first trial in the world to ever utilize a gene therapeutic that has been modified in such a manner as to improve the ability of the gene therapeutic to get into targeted ovarian cancer cells. This study was presented at the American Society of Gene Therapy in May of this year and the Foundation was acknowledged in a very public manner. Accrual to this study continues.

With both of these projects well underway, the foundation has just recently granted the researchers at UAB another $35,000 to help fund an additional clinical trial. The Early Phase Clinical Trial Evaluating the Potential Utility of the Novel Death Receptor Targeted Monoclonal Antibody, TRA-8, in Combination with Conventional Chemotherapy in Patients with Ovarian Cancer . This is an exciting trial that will investigate a new monoclonal antibody, TRA-8, that in large part has been developed here at UAB in collaboration with Sankyo, Inc. TRA-8 targets the death receptor type 5 on the surface of ovarian cancer cells. The $35,000 will be utilized to support important laboratory studies that will assess whether we can identify biomarkers that will predict sensitivity of ovarian cancer primary specimens to this novel therapy. Accrual to this trial is expected to begin later this year.

With the efforts being made across the country and all that is on the horizon here at UAB, we can remain hopeful that answers we have been longing for are almost here. We must also continue our efforts and in educating the public of the signs and symptoms, as well as the facts of this deadly disease. Together, we can and will make a difference.

OVASURE: the new name in early detection

Recently, FOX news touted a new test for the early detection of ovarian cancer called OvaSure. The news reports stated the test was 95% accurate in detecting ovarian cancer, even in the early stages. According to Dr. Alvarez, lead researcher at UAB, the technology is promising but has yet to be validated in an independent blinded set of serum samples. He refers to the following website for the position statement by SGO: http://sgo.org/WorkArea/showcontent.aspx?id=954 "In a nutshell, promising but not ready for prime time," according to Alvarez. To learn more, you can also visit http://wordpress.com/tag/ovasure/

Dear Volunteers...

A few things are changing at the foounation and we need your help. . .As most of you know, we typically have monthly volunteer meetings, however, we know how valuable your time is and we want to make it easier for you to help and to help with what you love. You will now have the opportunity to help specific events and/or projects. There may be a certain event that you love or a specific time of year that allows you more volunteer time. Either way, we ask that you look at the list below and see if there is a certain area that you feel you would want to dedicate your time and energy. In doing this, our hope it that we can cut down on the time you spend in meetings, develop closer relationships with people that share your same passion, and make our events reflect an even more personal feel of dedication and love to this cause. If you are interested in becoming a volunteer or continuing your efforts, please email Tiffany Denson at tiffany@nlovca.org and let us know what area is best for you. Thank you!

Ovarian Cancer Awareness Project / August-October

Ovarian Cycle 100 mile Ride to Change the Future / January-Mid-March

Motherwalk 5K / March-May

Motherwalk Post Event Benefit / April-May

Eggs 2 Ovaries (in conjunction with Post Event Benefit) / March-May

Nursing Scholarship Program

In this Fight Together,

Lori Livingston and Tiffany Denson

Congratulations to All Those Who Helped to Pass Alabama's Ovarian Cancer Car Tag!

Here's an update on this huge success. First, a major thanks to the Birmingham Auto Dealers for purchasing over 700 Ovarian Cancer Research car tags and to all who purchased their own car tag to fund vital research at UAB Hospital, which houses a nationally ranked Gynecologic Oncology program in the state of Alabama. This group is currently putting together 700 letters with receipts and inserts that explain what will happen next with the ovarian cancer car tags. Basically, individuals will have to wait until the tags are produced before they can pick them up. Unfortunately, the courthouses will no longer allow you to pre-purchase the tag after June 30, 2008. The courthouses/car tag offices cannot accept any more pre-commits now that the BADA helped meet the quota. Hopefully, the tags will be ready for pickup by Christmas of shortly after the start of the New Year. At that time, those of you have signed up for a tag will receive a postcard letting you know that you can pick up your tag at your local courthouse. Visit www.ovariancancercartag.com for more information.

Ovarian Cycle Is Coming In 2009...

Jump start your year with a 100 mile ride to change the future and get in shape! More details coming soon! Visit the following link for more information: http://ovariancycle.org/

September 2008

Tina DiMonte got Governor Riley to declare the month of September Ovarian Cancer Awareness Month in Alabama. We received a printed proclamation that will be framed and displayed in the clinic.

Speaking of Awareness Month, we will have 2 Awareness tables. We'll have one at Kirklin Clinic on Thursday, Sept. 4 from 10 - 3 and one at UAB Highlands on Friday, Sept. 5 from 10-2. I'll send a separate e-mail showing who all has signed up to work so far. We basically talk to folks about signs & symptoms of ovarian cancer and the cervical cancer vaccine, and pass out literature on all the gyn cancers.

Mark your calendars for September 5 to wear teal for "Teal Time". That evening will be the Stand Up 2 Cancer national broadcasts on ABC, CBS, and NBC.

Janet Dees will coordinate a talk at Brookwood Hospital, Women's Classroom, Thursday, September 25th noon - 1:00 on Ovarian Cancer Signs/Symptoms and Screening. It will be a bring your own brown bag lunch. Janet will see if any news media would like to cover it! Each September there is an in service meeting on gyn cancer for GYN Cancer Month. We usually have some CanSurvive folks in attendance, so come on if you'd like to join in...

Our regular monthly meeting in September: Hilary from the ACS will tell us about the Look Good Feel Good and bring a kit showing what you get when you attend this training. She will also talk about many other things happening for patients to become involved in. Lunch will be donated by and prepared by McAlister's.