Thursday, March 19, 2015

iPhone App for breast cancer survivors - Dana-Farber & Apple

App developed in collaboration with Dana-Farber researchers allows breast cancer survivors to share symptoms instantly

March 09, 2015

Share the Journey app part of new Apple software aiming to transform medical studies

A new iPhone app launched by Apple today will for the first time provide physician researchers with instant data from breast cancer survivors with a goal of providing patients improved post-treatment quality of life. The Share the Journey app, developed by Sage Bionetworks, with the help of Ann Partridge, MD, MPH, senior physician at the Susan F. Smith Center for Women’s Cancers at Dana-Farber and founder and director of Dana–Farber’s Program for Young Women with Breast Cancer, enables breast cancer survivors to easily share side effects of breast cancer treatment with researchers.

“This is a beautiful marriage of technology and medicine, and a potentially extraordinary resource for research and for learning about how what people are doing day-to-day may affect their post-treatment symptoms,” said Ann Partridge, MD, MPH, who is also the director of the Adult Survivorship Program at Dana-Farber. “For breast cancer survivors, this is an opportunity to work on improving health by harnessing a technology that is already part of their daily lives, where their experiences can be shared with the broader breast cancer community so they can support each other and learn from each other.”

Women who have undergone surgery, radiation, or drug therapy to treat breast cancer may experience symptoms that affect quality of life and impede recovery. Participants in Share the Journey will be prompted to set personal exercise goals and write about activities that may positively or negatively affect their symptoms. By collecting this and other data from iPhone sensors, participant surveys, and health diaries, Share the Journey tracks five common consequences of breast cancer treatment: fatigue, cognitive difficulties, sleep disturbances, mood changes, and reduction in exercise performance.

Participants will also be asked for feedback on how to enhance the study or better reflect their interests. These tasks and surveys should take no more than 20 minutes per week, and women who take part can participate in every aspect of the study or in only elements of their own choosing. Collecting women’s experiences after breast cancer treatment in this unique study can create a trove of data based on well-validated surveys and measurements continuously improved upon based on feedback from study participants.

Share the Journey is part of the ResearchKit suite of apps unveiled by Apple today which makes it easier to recruit participants for large-scale studies, accessing a broad cross-section of the population. Study participants can complete tasks or submit surveys right from the app, and are presented with an interactive informed consent process, which helps explain the study's purpose and how data will be used. Judy Garber, MD, director of the Center for Cancer Genetics and Prevention and physician in the Susan F. Smith Center for Women's Cancers at Dana-Farber, also advised in the app’s development.

Thursday, January 8, 2015

Combination of carboplatin and chemotherapy improves outcomes for triple-negative breast cancer patients

Combination of carboplatin and chemotherapy improves outcomes for triple-negative breast cancer patients

December 11, 2014
Eric Winer, MD

In a clinical trial involving women with triple-negative breast cancer, patients who received the drugs carboplatin and/or bevacizumab in combination with standard chemotherapy prior to surgery were more likely to have their tumors disappear entirely from the breast, according to data presented by investigators during the 2014 San Antonio Breast Cancer Symposium.

Although bevacizumab doesn't reduce long-term rates of cancer recurrence, the results raise hopes that carboplatin can be an important part of the fight against triple-negative cancer, say the leaders of the study, which was organized by the Alliance for Clinical Trials in Oncology with extensive involvement of physician/scientists at Dana-Farber Cancer Institute.

The investigators analyzed data from 360 patients with triple-negative breast cancer, the vast majority of whom had a form of the disease known as basal-like tumors. Triple-negative cancer, named for its cells' lack of three key receptors, accounts for about 15-20 percent of all breast cancers and tends to be aggressive, but can often be treated successfully if caught early. Basal-like tumors are made up of cells that resemble the basal cells lining the milk ducts.

In the trial, patients with triple-negative breast cancer were treated with "neoadjuvant" chemotherapy — which helps shrink tumors so they can be surgically removed — either alone or in combination with bevacizumab or carboplatin or both. (Bevacizumab prevents tumors from developing networks of blood vessels; carboplatin is a platinum-based chemotherapy agent.)

The researchers found that 61 percent of patients with basal-like tumors who received a combination of carboplatin and chemotherapy experienced a pathologic complete response — no microscopic evidence of cancer in the breast following surgery to remove tumor tissue — compared to 47 percent of those who received chemotherapy alone. Roughly the same improvement was seen in patients with other types of triple-negative breast cancer.

"In general, patients with triple-negative breast cancer who have a pathological complete response (pCR) with neoadjuvant chemotherapy are much less likely to experience a recurrence," says the study's senior author, Eric Winer, MD, director of Breast Oncology at the Susan F. Smith Center for Women's Cancers at Dana-Farber. "While we are optimistic about the role of carboplatin in triple negative breast cancer, we still do not know if it will lead to a high cure rate. Ongoing studies are addressing this issue and attempting to determine how and in whom to use carboplatin."

Funding for the study was provided by the National Cancer Institute, Roche-Genentech, and the Breast Cancer Research Foundation.

The lead author of the study is William Sikov, MD, of Brown University. Co-authors are William Barry, PhD, Sara Tolaney, MD, and Mehra Golshan, MD, of Dana-Farber; Katherine Hoadley, PhD, and Charles Perou, PhD, of University of North Carolina Lineberger Comprehensive Cancer Center; Brandelyn Pitcher, MS, of Alliance Statistical Center, Durham, N.C.; Baljit Singh, MD, of New York University Medical Center; Charles Kuzma, MD, of Southeast Cancer Control Consortium; Timothy Pluard, MD, of Washington University-St Louis Medical Center; George Somlo, MD, of City of Hope Comprehensive Cancer Center; Elisa Port, MD, of Mount Sinai Medical Center, New York, N.Y.; Donald Berry, PhD, and Lisa Carey, MD, of MD Anderson Cancer Center; Olwen Hahn, MD, of University of Chicago Medical Center; and Clifford Hudis, MD, of Memorial Sloan Kettering Cancer Center.

Friday, January 2, 2015

Hello, 2015! I love you!

From Bryce Andrews' book, "Badluck Way" -

"We let the fire die when the storm broke, and rode together toward the higher pastures and the barn. Every tree was dripping and the creeks had swollen. It occurred to me that I had achieved a rare thing: I was living at the center of my heart's geography. And I knew it."

That's how I feel about my life. I am living at the center of my heart's geography: my love for my children, for my life in Davis, for my friends at the farm, for the farm itself, for all my friends and family, for my healthy body.

So, hello, 2015. I love you! Happy New Year!

These photos reflect what I've loved about 2014.

Wednesday, October 1, 2014

Ignore all that stupid breast cancer pink B.S. in October - do this instead

Finally! An organization that exposes the bullshit of the pink ribbon and all things pink in the breast cancer race for making money off of us! Thank you, Kevin, for leading me to this group, Breast Cancer Action:

Think Before You Pink® – Stop the Distraction

By Karuna Jaggar, Executive Director

September 30, 2014

It’s Breast Cancer Industry Month and the pink floodgates have opened. And again we ask: what have all these pink ribbon products and promotions done for women living with and at risk of breast cancer?

Together, over the years, we’ve changed the landscape of pink ribbon marketing. Pinkwashing is now a household word. People understand that you always have to “follow the money” in pink ribbon marketing. We’ve exposed the hypocrisy in pink ribbon fundraising and achieved some momentous wins against corporations.

This October, we’re taking it further and targeting some of the most outrageous pink ribbon promotions that exemplify everything that’s wrong with pink ribbon culture. We’re calling out the empty awareness, the misinformation, the profiteering,the pinkwashing, the degrading of women, the “tyranny of cheerfulness” that hides the harsh realities of this disease.

We’re sick of marketing giants raking in billions of pink ribbon dollars while women continue to be diagnosed with and die from this disease.

Pink ribbon culture distracts from meaningful progress on breast cancer in six fundamental ways:

Pink ribbon products spread empty awareness. “Awareness” has failed to address and end the breast cancer epidemic. Who isn’t aware of breast cancer these days? Pink ribbon trinkets on store shelves that promote “awareness” ultimately change nothing. We have more than enough awareness, but not nearly enough action that will make a significant difference to whether women get breast cancer or survive it. By making the public think “awareness” is the end goal, pink ribbon culture defuses anger about breast cancer and its devastating impact, and distracts us from the meaningful actions that will achieve health justice for us all. Oriental Trading, for example, is spreading empty awareness via its endless supply of plastic pink ribbon trinkets – the company pockets all the money from these sales!

Instead of more meaningless gestures that defuse righteous anger and distract us from the real issues, we need bold action to address and end the epidemic.

Pink ribbon promotions spread misinformation. Whether by over-inflating women’s risk of developing breast cancer, spreading the myth that “early detection is your best protection,” focusing on a five-year cure rate for a disease that remains a risk throughout a woman’s life, or other ways of cheerfully fudging the statistics, many pink ribbon promotions fail to tell the whole truth. These inaccuracies allow pink ribbon marketers to manipulate consumers’ emotions through fear-mongering and false promises—in order to sell more products. The NFL, for example, is spreading misinformation about breast cancer by repeating disproven and misleading advice about mammography screening in their “Crucial Catch” campaign.

Breast cancer campaigns must offer evidence-based information that does not fuel fear or offer empty promises in the attempt to sell pink products.

Corporations exploit concern about breast cancer for profit. Each October, marketers take advantage of people’s sincere concern about breast cancer to make money and generate good publicity. Companies sell products, make profits, and seek customer goodwill by claiming to care about breast cancer. Yet, most of these promotions ultimately benefit corporations far more than they help women living with and at risk of breast cancer. By tapping into our generosity and genuine desire to help, these companies avoid transparency about where the pink ribbon money goes and too often leave consumers unable to accurately evaluate the promises made in product advertising. Kohls’ recent “Pink Elephant in the Room” promotion, for example, was outrageous profiteering; it exploited concern for women affected by breast cancer to make millions for the company.
Companies and charities must honor people’s good intentions with full transparency and accountability in their breast cancer fundraising and marketing.

Some pink ribbon products are linked to causing breast cancer. Years ago, Breast Cancer Action came up with a term for this, pinkwashing: the outrageous corporate practice of selling products linked to an increased risk of breast cancer while claiming to care about (and profiting from) breast cancer. It is outrageous and deeply hypocritical for companies to make money and gain customer goodwill from products that increase the risk of the very disease they claim to care about! Alhambra Water, for example, is pinkwashing by selling plastic polycarbonate water bottles which contain BPA, a hormone-disrupting chemical linked to breast cancer.
Companies that claim to care about breast cancer should make sure their own products and services don’t increase women’s risk of breast cancer.

Pink ribbon promotions often degrade women by objectifying and sexualizing women’s breasts and bodies. From “save the boobies” to “save the ta-tas” to “save second base,” campaigns like these demean and insult women—and distract from the true focus of saving women’s lives. They highlight narrow standards of beauty (thin, white, able-bodied, and young), depict women as coy sex-objects and too often promote the fantasy of “perfect” breasts. These sexy/cute campaigns hide the lived experiences of women in all their diversity and complexity. NASCAR, for example, is selling breast cancer awareness t-shirts that say “Check Your Headlights” which degrade women by objectifying and sexualizing women’s breasts and bodies.

We must honor women’s rich complexity and full diversity, rather than obsess over narrowly defined body parts as the focus of breast cancer campaigns.

Pink ribbon culture obscures the harsh reality of breast cancer by creating a single story of triumphant survivorship based on positive thinking, beauty tips, and sanitized, carefully chosen images of women living with the disease– and sometimes women who do not even have breast cancer. Breast cancer is not pretty and pink, and many women who “fight hard,” “fight like a girl,” and try to “beat breast cancer” develop metastatic cancer and still die from the disease. Breast cancer is only profitable when it’s palatable, and the pink ribbon covers up the devastating, harsh reality that so many women and their loved ones are dealing with. Hooters’ breast cancer campaigns, for example, obscure the harsh reality of breast cancer by promoting a story of triumphant survivorship based on positive thinking, beauty tips, and sanitized, carefully chosen images of women.
We must value all women living with and at risk of breast cancer and recognize the hard realities of breast cancer, including and especially metastatic disease.

If these marketing giants really care about addressing breast cancer, they’ll Stop the Distraction! They’ll take bold action, provide evidence-based information, be accountable and transparent in their fundraising, stop degrading women, value women’s diversity, and stop hiding the harsh realities of this disease.

Take a stand against the industry that is taking advantage of our goodwill, profiteering off this disease, and distracting the movement from meaningful progress on breast cancer.

Whether you are joining us for the first time or are a long-time Breast Cancer Action activist, thank you for taking action with us and demanding real progress on breast cancer.

P.S. After you let these pink offenders know what you think about breast cancer campaigns, join us on Facebook and Twitter and share our “Stop the Distraction” graphics with your friends and family and let the world know why many pink ribbon promotions do more harm than good.

This entry was posted in BCA Action Alerts, BCA News, E-Alerts.>>

Wednesday, September 24, 2014

60 years young

it would be ridiculous to whine about being "old" at 60, considering what i went through to get here! but it does feel weird, oh so weird, to say i am 60. but 60 feels wonderful and i've never been more grateful - both of my kids are very happy and healthy and i see them often, i love the farm and my farm friends, i ride my bike instead of drive my car 99% of the time, and i love everything about davis and my life here. la vie est belle and i look forward to growing older!


Tuesday, August 26, 2014

Tested Negative for BRCA 1, BRCA 2 mutations

I heard from the Kaiser genetic counselor today that I tested negative for the BRCA 1 and 2 mutations. It's good news for my birth family and also my kids. The counselor said there is a possibility of an unidentified gene which caused breast cancer for me, my birth mother, and my birth grandmother, so my birth sister and her daughters need to be vigilant about yearly mammograms and self-exams. It's good news for me because I don't have to go make plans for an oophorectomy. Here's a good summary of what testing negative or positive means:

I'm grateful for Obamacare and the fact that genetic counseling and testing are now free for members of high-risk families. This may save many, many lives.

Tuesday, August 19, 2014

Jimmy's Music Video Directorial Debut!!

this is my son Jimmy's first music video debut as a director!! congratulations, jimmy and bianca!!

the song is for sale at iTunes here:

Tuesday, August 12, 2014

BRCA 1 and 2 Genetic Testing Today

I was adopted in 1954, and in 1997 I found my birth family and discovered that my mother and grandmother had both died of breast cancer. But I decided against genetic testing for BRCA 1 and 2 because I knew that I would not be able to get health insurance with a new company if I left California, if I had tested positive. I was also very afraid to find out.

In 2008, I was living in Nevada and was diagnosed with breast cancer and had a double mastectomy. I had genetic counseling, but decided against genetic testing because the genetic counselor said that based on my family history (including the fact that my mother and grandmother and I had breast cancer after age 50), the formula indicated that my chances of testing positive for BRCA 1 or 2 was 7%, hardly worth the $3,000 out of pocket since Myriad held the patent and my health insurance would not cover it. I was also still very afraid to find out.

Myriad has now lost that patent, and Kaiser offers the genetic testing to high-risk patients free of charge as a result of Obamacare. So today I met with a Kaiser genetic counselor and he recommended I have the test. He said he thinks I will most likely test negative because of the same factors that my other genetic counselor stated, but because testing positive means there is a very high risk of ovarian cancer, he said it's important to know and then be able to make the decision about having an oopherectomy or not. I would also like to know if I test positive for BRCA 1 or 2 so that my kids can be more informed about their chances for breast cancer. I have a half sister who has two daughters, and I have four half brothers, and this information will be very important for them since we share the same mother and grandmother.

There's something about knowing I'll be 60 years old next month that's made me not afraid to find out if I test positive for these genes. So today I had the blood test. The genetic counselor handed me a kit which I gave the phlebotomist in the lab, she drew the blood, it was quick and painless, the lab will mail the kit to Ambry Genetics, and they'll send the results to my genetic counselor. I should have the rest results in two to three weeks.

There are many genes that can cause breast cancer. Even if a person tests negative for BRCA 1 or 2, it doesn't mean they won't get breast cancer caused by another gene which is undetectable at this time. But I'm glad we have this test for these two genes, which enables us to make informed decisions going forward.

More info about genetic testing:

This is an excellent video from Dana-Farber Cancer Institute about BRCA genetic testing:

Saturday, July 5, 2014

five years since treatment (!!!!!)

being diagnosed with breast cancer is so frightening. and finding out that it's triple-negative breast cancer compounds that fear because of higher rate of recurrence within the first 3-5 years compared to non-TNBC. i remember after the first christmas after my diagnosis, i didn't buy gift wrap on sale for the next year because i didn't think i'd be alive for another christmas. i was 54. since TNBC can't be treated with hormonal therapy (tamoxifen, aromatase inhibitors) after chemo and radiation, all i can do is stay as healthy and active as possible, do self-exams (much, much easier, with a double mastectomy and no reconstruction, checking the scar area for recurrence), and enjoy life. it's been five years and i'm almost 60 - my life is so full and so happy - being with my kids, swimming, riding my bike, volunteering at the farm, writing a book, working on photography projects, loving my life and so happy to be back in davis.

i know recurrence can happen at any time, but having reached the 5-year mark helps me look ahead without the anxiety i've had over the last five years. 'Triple-negative breast cancers have a relapse pattern that is very different from hormone-positive breast cancers: the risk of relapse is much higher for the first 3–5 years but drops sharply and substantially below that of hormone-positive breast cancers after that. This relapse pattern has been recognized for all types of triple-negative cancers for which sufficient data exists although the absolute relapse and survival rates differ across subtypes.' -

much progress has been made in treating TNBC with targeted therapies:

a good overview of all aspects of TNBC:

5 years!