The stories below were submitted to the Project Innovation website from individuals. We encourage all individuals who have benefitted from innovative therapy, innovative cost discussions, or shared decision making practices, either themselves, family, friend or loved one to share their stories.

Medical Innovation: Keeping People in the Fight Against Cancer

After 6 years plus of keeping my cancer at bay, I had to change medications due to an unrelated illness. The cancer got a running start, and I am now one month into a clinical trial, thankful for medical innovation that lets me keep up the fight.

Bob T.

Inspired by Medical Innovation

I am a 3-time cancer survivor and a real time benefactor of cancer research innovation. I was first diagnosed with Non-Hodgkins Lymphoma in 2001 and treated with conventional therapy. After a relapse in 2003, I was treated with an immunotherapy innovation. In 2012, my NHL returned and I had a stem cell transplant. I am healthy and surviving today because of cancer innovation. When I was first diagnosed and in treatment, I was inspired by the cancer survivorship programs of Lance Armstrong and his Livestrong Foundation. At the same time, I read the early research by two oncologists about the possible relationship of increased survival and physical fitness: The Force Program. Further research in later years has confirmed this. Since starting a planned fitness regimen in 2002, today I am a top level senior (65+), bicycle racer, and coach. In 2011, I placed 7th in the US Senior National Games and in 2013, I placed 23rd only 8 months after my stem cell transplant. I am truly grateful for all the cancer research and innovation. My goal today is to continue to inspire and coach other cancer survivors.

Michael A.

Enhancing Innovation Through the Communication of Clinical Trials

I read something in Scientific American categorized as an advertisement titled, “Putting innovation on the front burner: NPAF’s blueprint for action on cancer” and I have a response as a Leukemia survivor about clinical trials. I think the specific paragraph about “Enhance the delivery of innovation through improved communication and coordination between providers and patients…” made exactly the point I would like to discuss.

I was approached by an unfamiliar doctor with a huge packet of consentment paperwork asking if I wanted to participate in a trial for anti-microbial medication. Just having been diagnosed with Acute Myelogenous Leukemia only 8 weeks prior, I was not educated enough on the any of the medications and procedures to feel safe straying from the most normal tried and true regimen prescribed by the doctor I knew. Had this awesome coordinator I dealt with, or even my doctor approached me to discuss the benefits, the medications that would be different, and the importance of these trials (besides the fact that most research I did on trial medication says it generally a last resort when all other options fail) I would have said yes.

I guess what I am trying to say is the approach to patients could be greatly improved, especially for newly diagnosed people. I was 33 at the time, so certainly did not need parental consent, but was still scared and overwhelmed. I was uneducated about the positive impact I could have contributed for future survivors, and not comforted by the appearance of an unfamiliar doctor when I had been mostly dealing with caring, nurturing females known for their incredible personalities. In the hospital they provide plenty of reading literature, found some on the cancer websites, but I was all alone to make all these important life changing decisions. I think the publication in Scientific American is a great way to spread awareness and hope to see more in the news so people know what trials are, how to find them, and how to feel about them. Unfortunately, I chose not to participate in that trial, but I did participate in a research project when I was approached by a nurse I knew asking me if I would be willing to meet with a doctor to discuss the opportunity.

Heidi M.

Saving Lives with Medical Innovation

Cancer research and clinical trials have guided every step of my cancer treatment. When my brain tumor (a low-grade glioma) was diagnosed, I turned to cancer research. A recent trial had shown that aggressive surgical intervention improves survival, so I chose to have brain surgery.

After surgery, another decision: should I have chemo and radiation, or save those weapons for later? Clinical trials have identified certain chromosomal changes that predict better outcomes, and my pathology results showed that I had those beneficial changes. That meant it was safe to delay chemo and radiation. This information has helped to preserve my quality of life and ability to continue working.

But I am still dependent on cancer research. Brain tumors like mine almost always come back, and almost always get more aggressive. Current treatment options can slow down the tumor, but they can't stop it. I need a better option, one that will prevent this tumor from cutting my life short. And I need it soon - hopefully before I have a recurrence. Medical innovation? My life, like so many others, depends on it.

Amy G.

Clinical Trials: A Critical Lifeline for Patients

A 54-year old Virginia male was diagnosed with stage 4 head and neck cancer and given a 30 percent chance of surviving 120 days. He was immediately enrolled in a clinical trial that was centered at Duke University, involving aggressive doses of radiation and chemotherapy, along with aggressive surgical intervention. The treatment destroyed the tumors, and this patient remains cancer free nine years later.

Patient Story: Clinical Trials and Innovative Treatments Save Lives

An example of successful treatment of a cancer patient through expedited enrollment in a clinical study involved a 35-year old single mother from Virginia who was diagnosed with adrenocortical carcinoma. Local doctors informed her that there were no medical measures available to stop her disease. Patient Advocate Foundation became involved in the case and negotiated her enrollment into a clinical trial that had just opened at the National Institutes of Health. She began treatment the next day. Novel therapeutic intervention was initiated one month later, and within four months the patient’s tumors had shrunk, and it was decided she would not require stem cell transplantation. Nine years later, she is cancer free.

A Promise Realized: One Patient Story

The real impact of innovation can be seen through one survivor, diagnosed with myeloma a decade ago and now entering his eighth decade of life. In 2012, this one survivor completed his goal of running a marathon in all 50 states, having participated in 70 marathons overall – and he intends to keep on running. In fact, he feels so good that even a marathon in every state is not enough for him. “We’re going to go to 100 marathons,” he says. “When we get there, we’ll go for 101.”

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