Is the tide turning?

Dr. Matthew Kulke, who heads the Program in Neuroendocrine and Carcinoid Tumors at the Dana-Farber Cancer Institute, calls 2010-11 a watershed moment in NET cancer. Results on the trials of Everolimus and Sunitinib were released, leading to their approval by the FDA for pancreatic NETs; trials were gearing up in the US for PRRT, the radiation treatment long in use in Europe for alleviating NET cancer symptoms, but about which questions remained in the US; the first cell lines for NETs were in development both in vitro and in vivo.

…every day brings a greater understanding…

If 2010-11 was a watershed moment in NET cancer history, 2015-16 may prove a true turning of the tide moment. The announcements and events of the last few months create new hope for every NET cancer patient. They range from substantial new research grants to significant drug trial results to a potentially entirely new understanding of how neuroendocrine tumors grow and develop.

Five years of growing change

When Jane was diagnosed in August of 2010, I read everything I could find on the topic. A Google search turned up barely a page of references–and some of those were duplicates. The day before Jane died, her doctor told me Jane’s case alone had doubled our knowledge of the disease. We spent about as much on treating Jane over those four months as was spent on research in the US for that entire year.

…a true turning of the tide…

Last month, more than 25 presentations were made at ECCO in Vienna on NET cancer–including a pair of featured presentations. We will spend more than four times as much money on research into NET cancer in the US this year as we spent in 2010. There is reason to hope.

Funding matters

In September, the NET cancer group at Iowa University received a SPORE Grant from NIH to study the “genetic and molecular composition” of neuroendocrine tumors with an eye toward developing new diagnostic techniques and treatment of the disease.

There is reason to hope.

The Caring for Carcinoid Foundation, which just changed its name to the NET Research Foundation, has funded a Phase I/II trial of an immunotherapy regimen at Stanford aimed at NET cancer that began this spring. Other groups are working to increase private funding of other NET research at cancer institutes across the country, though many of those plans are not yet public. For example, Caring for Carcinoid’s Pan Mass Challenge bike team and the Jimmy Fund’s NETwalkers Alliance Marathon Walk team combined to raise over $220,000 for NET cancer research at the Dana-Farber Cancer Institute this year.

Treatment matters

Results of the international PRRT trials, which included a number of US sites, were released at ECCO last month and could lead to FDA approval of that technique within the next year. Among the findings was a method of determining who the therapy would work well on.

…working to increase private funding…

Meanwhile, everolimus, already approved for pancreatic NETs, moved closer to FDA approval for gastrointestinal NETs as a result of the RADIANT-4 Phase III trials; telotristat etiprate, as reported here and in August, also will likely win FDA approval next year based on its recently completed TELESTAR trial.

Future matters

And these are just the highlights of the last few months. There are whispers of even bigger things on the near-horizon. Nothing looks like a cure yet–but every day brings a greater understanding of the disease and how it works, as well as new ideas for treatments that will not merely extend patients’ lives, but improve the quality of those lives as well.

…could lead to FDA approval of that technique…

We’ll look at all of these things–and much more–in more detail during the November 10 Walking with Jane Social Mediathon, which I am trying to get ready for. Stay tuned.