Posts Tagged cancer treatment

Donate Your Data – Share your Cancer Story to Help Yourself While Helping Others

By Sarah Stanley

A decade ago, Internet entrepreneur Marty Tenenbaum was diagnosed with melanoma. He visited several local oncologists, but each doctor recommended a different treatment strategy. With no clear solution, he decided to enroll in a clinical trial that was testing a melanoma vaccine.

The vaccine failed the trial. But, for reasons unknown, it saved Tenenbaum’s life.

Inspired by the difficulty of navigating his options, and the need for better ways to figure out which treatments will work for which patients, Tenenbaum founded Cancer Commons—the first & only open access nonprofit collecting and learning from real patient experiences to give patients the information they need.

Please watch this short video to learn more about Donating Your Data

 

 

 

“Everyone who has been diagnosed with cancer has felt the fright and anguish of having to make life and death decisions without adequate information, data, or time,” Tenenbaum says. “I vowed to do something to spare patients from this agony.”

To support this mission, Cancer Commons has now launched its new Donate Your Data (DYD) Program, an online registry that empowers people with cancer to anonymously share their cancer experiences to advance research and, in return, inform their own clinical care.

Through DYD, each patient records and updates information about his or her cancer experience in a private profile. This information may include stage, treatments, molecular test results, treatment responses, side effects, and more. All data will be de-identified and made freely available, giving doctors, researchers, and patients themselves an unprecedented resource to determine the best approaches to cancer care, according to each patient’s unique clinical history.

 

Donate Your Data Dashboards from Cancer Commons

Donate Your Data Dashboards from Cancer Commons

Based on the data they provide, patients receive customized news feeds and alerts to relevant clinical studies and trials, reports on any research that uses their data, and notifications concerning important research findings, all delivered through each patient’s personal DYD dashboard. Each patient can graphically track his or her cancer journey on a timeline, and will be able to selectively share it with physicians and other patients.

 

 

 

 

 

DYD does not focus solely on figuring out which treatments are most effective at shrinking or eradicating tumors for which patients. DYD aims to capture information on how patients approach every aspect of their cancer journey—including dealing with side effects and overall well-being—so that patients can learn from similar patients about what might work best for them.

For now, DYD is available only to lung cancer and melanoma patients, but Cancer Commons will soon be expanding to cover most cancers. If you have or have had melanoma or lung cancer, please consider joining Cancer Commons in making the dream of personalized cancer treatment a reality for everyone. Donate Your Data now.

For more information, visit http://www.cancercommons.org. Follow Cancer Commons on Facebook and Twitter.

Sarah Stanley is Associate Editor at Cancer Commons, where she helps translate cancer research into useful insights for patients.

 

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CureLauncher – Personalized Clinical Trial Matching

 

CureLauncher gives you the power and the support to make a life changing decision.  Warm, compassionate, and experienced relationship managers will guide you through the process of finding a new treatment.  Taking control and knowing your options opens up a whole new world of hope.  Visit CureLauncher to get started on a life changing quest! CureLauncher can help connect you with clinical trials in your area.

 

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Click on the banner above to learn more about CureLauncher

CureLauncher – Information is Empowerment! – Testimonial 

By Barb  Hollingsworth, guest blogger

Over the holidays of 2012, I knew I wasn’t feeling myself but it wasn’t until I had jaundiced two days after Christmas that I knew it was time to do something about it.  Upon arrival at the Emergency Room, I was quickly rushed through to be seen by a Doctor who immediately ordered a CT scan of my abdomen.  Several hours later I heard the words that would instill fear in the toughest of men – that there was a “mass” in my Pancreas.  The next morning I was sent to surgery to have a stent placed in my bile duct and a biopsy of the mass was taken. Two days later it was confirmed that I have Pancreatic Cancer.  The tumor was nearly 5cm in size in the head of my Pancreas and was quite aggressive.  I met with the Oncologist prior to being discharged from the hospital where I was left feeling there was absolutely no hope for a better tomorrow for me. 

 

I have always been a strong woman and after the initial shock and disbelief that I was likely facing the end of my days, that fight in me started to return. I was not convinced that this was the end and I just knew that dying was not an option for me! So I started researching every possible avenue of information about Pancreatic Cancer and Cancer in General.  I reached out to my family and friends on social media where the compassion, love and support I receive is astounding! Through them and the Cancer Center where I started chemotherapy treatments, I kept hearing about Clinical Trials. I had a basic knowledge of clinical trials only and was afraid to deter from a “proven” method of treatment.

 

I soon realized that information is empowerment and that most “proven” treatment methods used today were developed and recognized because of Clinical Trials. The very chemotherapy regiment I am on was founded just a few short years ago in Clinical Trials. That’s when I knew I had to change my thinking and participate – if not to cure myself, but to help find a cure for future generations.

 

One day, a very dear friend recommended I contact CureLauncher since my Oncologist had not found any Clinical Trials that I would qualify for. Amy contacted me the very same day I requested information from them and went to work right away to search for a match to a Clinical Trial for me. Within days she had located several options for me. I found out in the mean time that my treatments were working so well that my tumor had gone from “unresectable” to virtually “undetectable” on the CT scans! This meant I no longer qualified for the Clinical Trials and was unable to participate.  I am in remission and looking forward to a long healthy future – and I know that somewhere, some people faced with the same “death sentence” that I was – took part in the Clinical Trials that ultimately led to my own cure! I can’t say enough about CureLauncher.

 

 If you have been diagnosed with any form of cancer, take charge of your future and remember – information is EMPOWERMENT!


 

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