Crowdsourcing effort takes aim at deadliest breast cancers

CHICAGO – Forget pink ribbons. Spitting in a tube for science is what joins a growing group of patients with breast cancer who participate in a unique project to advance the treatment of the deadliest form of the disease.

For many patients across the country 150,000-plus whose tumors have spread to the bones, brain, lungs or other distant organs, the awareness of breast cancer tonality advertising and survival every October it is a bit too optimistic. They know that cancer is likely to kill them. And they have often felt neglected by the current defense and medical research.

But now have a way to get involved with a new great project that aims to bring together vast troves of information about their diseases in the hope of finding new and better ways to treat patients like them – women whose cancer has spread, or metastasis, and left almost no options.

The article continues after the announcement

“Patients want to live and we know that research is the way we will be able to live,” said Beth Caldwell, a former civil rights lawyer in Seattle diagnosed with metastatic disease in 2014.

The idea is to bring together molecular and genetic clues of such a large group of patients with metastatic breast cancer as possible. With the data of thousands of people, researchers think they will be better able target treatments or reach new ones, answering important questions about the disease. For example: Is there anything unique about tumors that spread to the brain, or that recur many years after diagnosis? Allowing very few women who survive other for many years despite the same prognosis?

Most patients with breast cancer are treated at centers that do research on tumors, so that participation in studies in academic medical centers away from home is difficult at best. Or sick patients die from their diseases face additional obstacles.

This project is different. Patients register online, mail in saliva kits for genetic testing, and allow the use of their tumor tissue samples and medical records. Researchers use social networks to keep them posted on the progress, and invite participants to visit periodically the Cambridge, Mass., Laboratory, where samples are being analyzed.

Use of word of mouth and social networks, Metastatic Breast Cancer Project, led by scientists at Harvard University and the Cancer Institute Dana-Farber and the Institute of Broad Institute of Technology of Massachusetts, has enrolled more than 2,600 patients so far since its launch last October. It is a rate almost unprecedented in medical research.

“I enrolled in my recliner in my living room. I did my tube of saliva in bed,” Caldwell said.

The mother of two turns 40 on Thursday and cancer has reached his brain, lungs, bones and liver. She tries to stay positive, but October “is a month you just want to hide under the covers and check out” Caldwell said. “It’s just not want to be confronted with all this junk pink.”

Lara MacGregor, who runs a nonprofit group based in Louisville Ky., For cancer patients, said he feels the same way.

“Everything related to breast cancer survivors and is fighting cancer,” MacGregor said. “And we are sitting in the wings saying,” I’ll never celebrate the end of treatment. ”

MacGregor was pregnant when diagnosed with breast cancer in early stage in 2007. He had removed both breasts plus chemotherapy, and continued his life thinking he was cured until two years ago, when tests for pain persistent back revealed the cancer had returned and spread to the bones.

Now 39, MacGregor read about the online project, immediately decided to participate, and e-mailed dozens of friends and contacts who also signed.

Before mailed to your kit saliva, “my 8-year-old drew a picture on the box and said, ‘thank you for helping my mom,'” MacGregor said. “I hope the real data about real people will lead to better treatment options,” he said. “My life depends on it.”

Over 200,000 people, mostly women, are diagnosed with breast cancer in the country every year. Most are diagnosed when the cancer is a potentially curable early stage, the stage. For about 6 per cent, or 15,000 patients, the disease has already spread at diagnosis.

And about 30 percent of patients diagnosed with early-stage breast cancer, the disease eventually recur in distant parts of the body. The median survival for patients with metastatic disease is about three years.

According to an analysis of 2014 an alliance of advocacy groups for breast cancer, less than 10 percent of government investments and non-profit groups in the research of breast cancer in recent years was to study metastatic disease.

“metastatic breast cancer, in general, is an understudied area,” says Marc Hurlbert Foundation Breast Cancer Research. “We do not know, for example, how it has changed the tumor. Is it the same makeup as it was before? Do the cells have a different molecular profile of cancer that first started within?”

By collecting a large number of tissue samples and information about how the disease progresses in different people, the project may be able to discover useful trends. There was already some tantalizing clues, including small groups of patients who have responded remarkably well to standard chemotherapy or immunotherapy new drugs – some have survived for 10 years or more. Researchers hope DNA analysis help explain why and lead to treatments that improve the odds for all patients with the disease.

data will be published in a special online site and the program genomic data from the National Cancer Institute -. Make it available to other scientists and boost the chances of finding better ways to treat patients with metastatic disease

And the proof that crowdsourcing can draw thousands of patients to medical research is a major discovery in itself, given how difficult it can be said Dr. Nikhil Wagle, project leader and assistant professor of medicine Harvard and Dana-Farber.

“This project makes them feel empowered, makes them feel they are making a difference – if not to help themselves, then maybe the next generation of patients.” Wagle


– Lindsey Tanner

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