Let's cure neuroendocrine cancer

You made an impact...and it worked

On August 10, 2012, my gastroenterologist found a tumor in my small intestine during a routine exam. Neither he, nor I, nor any of my doctors could have predicted its existence, nor could we have imagined the possibility of finding at least 16 more tumors. I was diagnosed with metastatic neuroendocrine tumors, or NETs, which had spread to my liver and lymph nodes.

As a 28-year-old who had just gotten married 3 months prior, who was busy working on her MBA at night, and who finally felt like her world was perfect, this was all unimaginable. I had some very low moments in the beginning when there were so many unknowns. But the support, encouragement and wisdom provided by my family, friends, office friends, school friends, friends of friends, family of friends, non-profits, cancer books, new cancer friends, and of course, doctors, allowed me to pick myself up, put one foot in front of the other, and keep searching for answers.

In the weeks following my diagnosis, I traveled to meet specialists all over the country. Doctors were perplexed by my excellent health and young age. They had no better idea what to do with me than I knew what to do with myself. Eventually, I chose what I consider to be a middle of the road strategy. I found a comfort zone between "doing nothing" and "being aggressive."

First, I chose to begin the monthly injection of sandostatin in October 2012, which I will continue to do for a very, very long time. I have no side effects from the treatment, and other than a sore bum for a few days, life is completely normal.

Second, I underwent abdominal surgery in November 2012 to remove the primary tumor and lymph nodes in my small intestine. While it wasn't the Thanksgiving we hoped for - there was no turkey or homemade cranberry stuffing - it did provide a unique opportunity for my family to come together.

While I was preparing for and recovering from my surgery, your packages, postcards, notes, mustaches, prayers, mustached teddy bears, chocolates, cards, cupcakes, e-mails, zebra paraphernalia, donations, fundraising cookbooks, and everything in between, gave me so much hope. Your support cheered me up immensely.

I reached my first post-diagnosis milestone in January with a  follow-up MRI to find out how fast the tumors are growing. The report showed that the tumors in my liver have not grown and have even slightly shrunk! The tumors appear to be receptive to the sandostatin injections, and all anticipate this to continue for many years.

I feel lucky in so many ways. Lucky to have this weird cancer. Lucky to have found the best possible medical treatment. Lucky to be back to living my new normal life. Lucky to have friends and family who are as incredibly supportive as you.

There is nothing I could ever do to repay you for the genuine support you have shown me, but I will always do my best to try.

With lots of love, gratitude and sincere thanks,
Catherine

iCancer campaign reached its goal!

The iCancer indiegogo campaign closed,
but noise that we made surrounding the Oncolytic Virus Fund lived on!

Thanks to the efforts and donations of so many, a large benefactor donated the remaining funds for the project.  Phase 1 human trials of this powerful, cancer-eating virus developed by talented scientists at Uppsala University Oncolytic Virus Fund can now begin!

Thank you for being a part of this amazing journey to change the way the world funds scientific research and to cure neuroendocrine cancer!

As a community, you made an enormous impact on the iCancer campaign

As a community, we worked to raise the funds to potentially cure neuroendocrine cancer and help people like me everywhere.

Despite the fact that many neuroendocrine tumors are regularly overlooked during the diagnostic process, there is a new hope for those of us living with the disease. A potent potential therapy for neuroendocrine cancer is sitting idle in a freezer at Sweden's Uppsala University. The biotech industry abandoned it because it cannot be patented (ie., no profit).

You showed your support, helping to raise at least $35,000 for the Oncolytic Virus Fund. How much more? I don't know! You donated so much, and in places that I cannot see, we may never know for sure.

At the closing of the iCancer indiegogo campaign in February 2013, the total amount raised for the Oncolytic Virus Fund was a staggering $250,000.

THANK YOU!

We can still work to raise awareness for neuroendocrine cancer 

Over 11,000 new patients are diagnosed in the U.S. each year with neuroendocrine tumors (NET), and that number is increasing by 5% each year. This slow-growing type of cancer can start in any part of the body that has neuroendocrine cells, but it is most commonly found in the gastrointestinal tract and the lungs. It has nearly always metastasized by the time it is found, giving patients little hope for a cure and a future that, even in the best cases, includes management of the disease for the rest of their lives. For more information on neuroendocrine cancer, click here. 

You can still donate to the Oncolytic Virus Fund:
 
(These funds go directly to the Oncolytic Virus Fund at Uppsala University but are tax deductible in the U.S.)

Please also consider donating to:
 -- Carcinoid Cancer Foundation: