Hello everyone and welcome to my BRCA website for previvors and survivors. I’m hoping that together we can create a BRCA home where we can form a sisterhood and help each other. I’m going to try my hardest to get us the most factual and current information that is out there, where we can all stay informed, and make the best decisions about our health, and try to deliver it in a simple and easy to understand way. I welcome all feedback and any recommendations! IF YOU HAVE ANY TROUBLE NAVIGATING THE SITE…JUST EMAIL ME. LOST PASSWORD? EMAIL ME! If you are a previvor  or survivor, please feel free to tell your story in the forum, start a discussion, ask a question, or send me an email. If you have an event that you would like to publish, just let me know!

Please register and introduce yourself in your home state whether or not you are a previvor or survivor. If you belong to a support group–please list it for new members -also in your home state. I would like a woman or her family to be able to find support in her own community. It’s easy, just register (bottom right-under META) then after you get your password, go to the forum, click on your home state and hit-add a new topic.

Please show your support for all the women in your life - your mothers, sisters, daughters and friends.

We are international & domestic now!

We have raised lots of money for our cause & helped many people. I hope to continue to grow with your help. If any of you would like to see a special forum, just let me know. Let me know how you are doing as well!

The best part of this site is that you may remain anonymous! All you have to do is let me know you’d like to participate & I will post anonymously for you. I believe that is why this site has become so popular so fast. You don’t have to join to participate, although if I have your email address I can send you regular private updates.

The website is basically running by itself now. As new info becomes available, it will be posted. If you readers hear of anything important to share—please do!

This coming year my goal is to continue helping women & their families. When you hear of a family needing help, be there to shop, carpool, donate meals, get  gift certificates for salons, entertainment, dining, etc.  Let’s stay educated about nutrition, yoga, exercise…you think of it—let’s make it happen!

I would also like to have our BRCA awareness day in October to coincide with Breast/Ovarian Cancer awareness.  We need to involve our communities. Educate & make people aware & sensitive to our cause.

Be well you all.
Wishing you all continued good health. Thanks for your support!
x0×0
Tobey

BRCA NEWSWORTHY

ASCO Update: Emerging agents to change the landscape of ovarian cancer treatment

June 8, 2010 Analysis by: Jason Tse

ASCO or the American Society of Clinical Oncology has recently come out & said that they have had “encouraging” results with parp inhibitor drugs when combined with chemotherapy in the fight against breast & ovarian cancer. These drugs are Avastin, olaparib, AMG386, farletuzumab & voreloxin. Avastin is the frontrunner in these drugs & hopefully will be approved in 2011 to fight Ovarian Cancer.

Follow this link for this very interesting, promising news!

http://www.glgroup.com/News/ASCO-Update–Emerging-agents-to-change-the-landscape-of-ovarian-cancer-treatment-48853.html

My name is Sharlene Hesse-Biber and I am a Sociologist and Professor at Boston College.

I am conducting a study on women who have tested positive for the BRCA 1 and 2 genes. I hope to address the issue of why women seek this genetic testing and how they respond to a positive result, as well as the roles that other people in their lives play throughout the pre- and post- testing process.

I would like to set up a time to explore your experiences with genetic testing for the BRCA 1 and 2 genes. Such an interview would take about a half hour. Your participation in this research is completely voluntary, and if you choose to participate, you may withdraw from the study at any point throughout the project. I can interview you over the phone or if you are in commuting distance I can interview you in person.

I would also like to take a moment to tell you a little more about the study. I aim to address a current lack of research on women’s experiences with genetic testing for the genes linked to breast cancer and their responses to a positive result.  Some of the questions we will explore are:

1. How do women seek genetic testing for breast cancer?
2. What is the lived experience of women who have received a positive result? How is this affected if they have a family history of breast cancer?
3. What decisions, if any, do they make once they have a positive result? Is there a difference between their immediate and long-term decisions?
4. What role do their immediate family network, close friends, and co-workers play in their decision to get tested and in their post-testing experience?

If you are interested in participating in this study, please email me at hesse@bc.edu. I am also happy to answer any questions or concerns you may have.

Thank you for your time and I look forward to hearing from you soon.

Sincerely,

Sharlene Hesse-Biber

Professor, Department of Sociology, Boston College

Director, Women’s and Gender Studies Program, Boston College

BRCA NEWSWORTHY

It’s not over yet, but right now the courts have ruled for the people! My favorite article thus far is: click here to follow the link:

Invalidation of gene patents will benefit patients

The article was written 4/3/10 & comes from the website: http://www.news-medical.net/news/20100403/Invalidation-of-gene-patents-will-benefit-patients.aspx

If the ruling is upheld genetic testing & diagnosis will be open to more companies. Competition will put more players into the field & hopefully will be beneficial for patients.

BRCA NEWSWORTHY

Found this article: BRCA1 AND DEPLETION OF OOCYTE RESERVE

This seems to be where the info came from: American Society for Reproductive Medicine (ASRM) 65th Annual Meeting: Abstract O-103. Presented October 21, 2009.

http://cancerology.blogspot.com/2009/10/brca1-and-depletion-of-oocyte-reserve.html

Apparently researchers are studying the fact that BRCA positive women have lowered oocyte reserves & infertility issues.

These findings were presented by Dr. Oktay from the Dept. of OBGYN at the Westchester Medical Center-NY Medical College in Valhalla.

Dr. Keefe Chair of the Dept. of OBGYN at the NYU Langone Medical Center in NYC says that based on this info women who are BRCA+ should be advised that they may lose their eggs earlier than women not affected with the BRCA gene mutation.

Please place any comments here: http://previvorsandsurvivors.com/forum/general-discussion/brca-mutation-infertility/page-1/post-215/#p215

BRCA NEWSWORTHY

New Blood Test for Detecting Breast Cancer Comes Soon

reported by Cindie Leonard from Naturalnews.com

Please follow this link: http://www.naturalnews.com/z027324_cancer_brst_blood.html

Doctors & researchers are studying the risk of early breast x’ray vigilance for BRCA positive people & the risk of it causing radiation- induced breast cancer in this high risk group. Right now mammography is the standard tool that doctors use to screen for breast cancer lesions. A new blood test called BC-SERAPRO (it measures certain proteins in blood) is being developed to replace the mammography!

10/18/09 submitted by: Toni Zhong M.D. FRCS(C)

BRCA NEWSWORTHY

If you are living in Canada and need to have a mastectomy in the near
future, you need to know about this new breast reconstruction study out of
Toronto.  This study is especially suited to BRCA carriers.  We have just
opened enrolment at University Health Network and Women’s College for an
exciting randomized controlled trial comparing outcomes following one-stage
direct to permanent implant using Alloderm compared to the traditional
two-stage TE/implant reconstruction at the same time as skin-sparing
mastectomy or nipple sparing mastectomy.  This is a fully funded study that
is supported by the American Society of Plastic Surgeons and we have full
ethics approval at our four participating sites (Mount Sinai, Women’s
college, Princess Margaret, and Toronto General Hospital).  Currently in
Canada, only very limited hospitals have the authority to use Alloderm
because of its high price, but it is approved by Health Canada and has been
used in the US for many years with an excellent track record.  The
bottomline is that Alloderm has the potential to convert the traditional
practice of 2-stage implant recon to only one stage with better safety and
aesthetics than without this material.  If you join this study, you will
have a 50:50 chance of receiving the Alloderm implant reconstruction.  But
even more importantly, there are many benefits to being in a high-quality
clinical trial including being treated by the most experienced implant
breast reconstruction surgeons in Canada.   In summary, this study will give
high level evidence that can have important implication on QOL of breast
recon patients and potentially influence our current surgical practice.
Please visit our website at http://www.torontoalloderm.ca or call our
research coordinator Mrs. kate Butler at 416-340-4800 ext 2343 or email:
kbutler@uhnres.utoronto.ca.

BRCA NEWSWORTHY

We have declared 10/4/09 our first BRCA AWARENESS DAY!

We have decided to educate people about BRCA PREVIVORS! Help us spread the “previvor” word! The more we educate, the more we take the stigma away…the more lives we save!

PLEASE MAKE A CHARITABLE DONATION TO A BREAST CANCER ORGANIZATION IN HONOR OF PREVIVORS&SURVIVORS!

Please show your support for all the women in your life - your mothers, sisters, daughters and friends!

DO IT NOW…DO IT TODAY!

BRCA NEWSWORTHY

New drug olaparib offers hope to women with genetic breast cancer by David Rose

Follow this link: http://www.timesonline.co.uk/tol/life_and_style/health/article6400852.ece

Olaparib is made by AstraZeneca & is being used in clinical trials to treat & or prevent cancer in high risk or BRCA families. They feel this drug is very promising in blocking the protein that makes cancer cells –causing only the cancer cell to either die or shrink. (BRCA patients have the mutated gene that is supposed to repair or fix damaged DNA—therefore when the repair doesn’t work properly mistakes in the DNA accumulate, do not repair & cancer develops.)

BRCA NEWSWORTHY

Experimental cancer drugs cut tumors off from repair tools by Liz Szabo

Follow this link: http://www.usatoday.com/news/health/2009-05-27-asco-cancer-drugs_N.htm

These new experimental cancer drugs are called PARP inhibitors & they are being used in women whose tumors don’t respond well to hormones or Herceptin. These drugs are being studied in BRCA positive patients as well as cancer patients. BRCA patients have the mutated gene that is supposed to repair or fix damaged DNA—therefore when the repair doesn’t work properly mistakes in the DNA accumulate, do not repair & cancer develops. Apparently these PARP inhibitors are a repair enzyme that clean up & repair these damaged cells.