Monday, November 16, 2009

Sex Without Nipples

I thought this article from Salon.com on Sex Without Nipples addressed some key issues that relate to all breast cancer survivors. Stacy Lewis, VP of Programming at Young Survival Coalition is quoted and YSC is mentioned as a resource for young women fighting breast cancer.

Monday, August 17, 2009

Genetic Alliance Advocates Partnership Program

Just received this news about great opportunities for more advocate work. It would be an honor to attend either of these events. Plus, I've never been to Hawaii!
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Genetic Alliance invites you and your colleagues to apply for one or both of the upcoming Advocates Partnership Program opportunities at:

American Society of Human Genetics Annual Meeting
October 20-24, Honolulu, Hawaii

National Society of Genetic Counselors Annual Education Conference
November 13-15, Atlanta, Georgia

The Advocates Partnership Program provides you with:

* participation in every aspect of the conference
* amazing access to the genetics community
* exclusive daily briefings with professionals
* waived, full registration to the meetings
* up to $250 reimbursement for transportation, hotel room, or airfare


Where do you and your interests fit in the overarching field of human genetics?
ASHG is the premier conference to meet people who work in all areas of human genetics, including research, industry and policy. Come and participate in educational, scientific, and social discussions about the entire translational research pipeline.

Have you ever wondered what genetic counselors do, besides interpret genetic information?
NSGC is the place to learn more about the issues affecting genetic counseling and how strengthening the relationship between genetic counselors and advocacy groups is a win-win for everyone.

To apply, please fill out the application and return it to tmurza@geneticalliance.org no later than Friday, August 28, 2009 for ASHG and Friday, September 11, 2009 for NSGC.

For more information and program requirements please visit:
http://www.geneticalliance.org/advocates.opportunities

If you have any questions, please contact Tetyana Murza at tmurza@geneticalliance.org or (202) 966-5557 ext. 205.

Good News About Wine!

An article in Business Week (August 14, 2009) suggests "Wine May Shield Breast Cancer Patients from Radiation Side Effects", http://www.businessweek.com/lifestyle/content/healthday/630061.html

This is an Italian study, so surely no biases exist, right? Anyway, I am content to see a pro-wine study. heh heh I'll have to check the actual study data to find out if it matters if it is red or white wine.

Thursday, June 11, 2009

LBBC Teleconference Call: Breaking News from 2009 ASCO Meeting

Living Beyond Breast Cancer Teleconference, June 11
Speaker:
Virginia Kaklamani, MD, DSc, of Northwestern University, provided an overview of the latest medical research and quality-of-life news reported at the 2009 meeting of the American Society of Clinical Oncology.

Dr. Kaklamani is an assistant professor of hematology/oncology at Northwestern University. She completed her fellowship in hematology/oncology in 2003 and received a Master of Science in clinical investigation from Northwestern University. Dr. Kaklamani has a certification from the American Board of Medical Oncology and her interests include breast cancer, cancer genetics, studying high risk families and the role of exercise and diet in breast cancer.

Lymph nodes
whether to do therapy directly on the lymph nodes or not
benefit to adding radiation to lymph node region if 1-3 positive nodes?
if larger tumor (2+ cm) and positive nodes, then some benefit to add radiation to axillary, if smaller tumor, not so beneficial.

Tamoxifen
metabolism of tamoxifen. It is the metabolized form that is the active drug. If can metabolize tamoxifen well, then it is very effective.
anti-depressants (Lexepro, Zoloft and commonly used antidepressants) may affect tamoxifen (endoxifene levels). For example, taking Zoloft reduces effectiveness. Lexepro does not interfere, so is fine to use.

Chemotherapy trials
Avastin
inhibits the blood vessels from forming. Avastin is an antibody that goes to the tumors and keeps them from growing. Allowed to use it with Taxol in breast cancer. The Ribbon 1 trial is looking at taxane and zolota to see how effective it is in combo with these. It showed that it is effective, no matter what the treatment using in combo.

Aromatese inhibitors
how they affect brain function - short term memory issues
large adjuvant trial looked at cognitive function between tamoxifen and letrozol. Letrozol did a little bit better than Tam. Study found that all participants had lower cognitive function than women of the same age

Diet, Exercise
Exercise
not a lot of data, not a lot of randomized trials -- but women who exercise do better. IT is a predictor of how women will do.
Diet
There doesn't seem to be a specific diet related to decreased breast cancer recurrence. Weight loss or at least weigh maintenance do better than women who either gain or lose weight. Weight more important than diet.
Supplements
no supplement has been foind to be helpful in protecting against or helping women with breast cancer
Vitamin D -- no difference found -- but when start measuring Vit D levels only 25% of patients are Vit D sufficient. 75% of us are Vit D deficient, therefore, we should encourage women to take supplement to maintain a healthy level of Vit D.
Ask doctor to measure Vit D level!

PARP Inhibitors
Help repair DNA -- if inhibit, it keeps DNA from being repaired -- in cancer cells this is good. For Triple Negative, there already is an issue with the repair mechanism of the cell, so if add a PARP inhibitor, the cell won't be able to survive and will die. Use PARP in Triple Negative and BRCA1/2+ carriers.
-Alaporit (oral PARP Inhibitor) -- gave only PARP Inhibitor (had had chemo before and didn't respond) 41% had response to PARP Inh. -- not much toxicity (fatigue, nausea only), so can be used effectively by itself.
-BSI201 (intravenous) -- looked at chemo with gemcitobine and carboplatin with and without PARP. By adding the PARP Inh. to the chem, respond rate increased hugely. 16% to 48%! Progression free survival increased, and significant improvement in overall survival. It is showing effectiveness in population that hasn't had many alternatives when standard treatment not working.

Tuesday, April 14, 2009

Excellent News about Triple Negative Breast Cancer

"Unprecendented Partnership between the Triple Negative Breast Cancer Foundation and Susan G. Komen for the Cure will Fund Collaborative Team at University of Alabama at Birmingham"


Yep, that's a $6.4 Million research project being funded! The project will be looking at an antibody that the researchers developed to target triple negative breast cancer tumors. A targeted therapy for Triple Negative.....that is awesome news and way overdue.

Another news story I saw today, unfortunately brings up controversy concerning legislation introduced a few weeks ago. Arguments are being made that the legislation gives false hope to young women and is unnecessary. I personally think it is wonderful to mention women under 40 in legislation and to bring awareness to the unique needs of young adults. So phooey on the politicians who think this is unnecessary and that breast cancer in women under 40 is so "rare". 

Tuesday, March 24, 2009

Advocate Mentor Program

I am thrilled to be accepted to attend an Advocate Mentor Program at Indiana University April 21-23, 2009. This program is bringing advocates from Atlanta, Houston, Denver and Indianapolis to participate in education and experiential learning opportunities in genomics, proteomics and pharmacogenetics. I get to go because they accept advocates from other areas based on space available. :-) The Research Advocacy Network and Young Survival Coalition support the program.

This program works with advocates to provide an understanding of the new science in genomics, proteomics and pharmacogenetics. Participating advocates will meet and work with researchers in these areas. The program I am going to is not offered in Illinois right now, but is being offered in Indianapolis. The best part is that I received a scholarship to attend and all travel and expenses are paid for! 

A few details about the program. It is a project of the Advocate Core of the Indiana University Department of Defense Center of Excellence Research Grant (https://cdmrpcures.org/ocs/index.php/eoh/eoh2008/paper/view/1343). The program includes educational webinars before the face-to-face sessions, and the on-site sessions include experiential learning opportunities like being in the lab and spinning down samples and following tissue samples. I can't tell you how much I am looking forward to that experience. My inner scientist is jumping for joy!

I hope that when I am back from the Advocate Mentor Program I can have a chance to share my experience with other Patient Advocates. Even further, I hope to find out how we could get this program to happen in Illinois, involving the NCCTG and local researchers. It would be great to build local research/advocate relationships so that we can serve on study sections, concept and protocol review committees and ad hoc committees needing advocate input.