Money in my mouth

I had my fourth oral surgery in the last ten months on Tuesday. This one put in the post for the permanent implant that will replace the tooth that started this entire bit of lunacy last March. By the end of September, they tell me, this odyssey will be over. Frankly, I can’t wait. I am tired of being tired, tired of not being able to focus entirely on the things that need doing, and tired of not being able to spend the money I want to spend on fighting NET cancer.

…we can better support each other’s efforts.

Carcinoid/NETs patients face that exhaustion all the time. The difference is there is no real end to what they feel. The issues with my mouth are entirely curable. NET cancer is not–at least not yet. The work we do here is aimed at helping to change that. I wish I were better able to do that.

Support for immunotherapy initiatives

I’ve already written about our awareness goals for this year and the goals for our Marathon Walk team. Those are not, however, the only NET cancer goals we have for the year ahead. While the Program in Neuroendocrine and Carcinoid Tumors at the Dana-Farber Cancer Institute is the focus of much of what we do to support research, there are others engaged in important research as well that we want to increase our support to.

Carcinoid/NETs patients face that exhaustion all the time.

As we noted in last week’s Walking with Jane Carcinoid/NETs News podcast, the Caring for Carcinoid Foundation has launched a three-pronged immunotherapy initiative that will involve funding one drug trial and two pieces of research. I want to do everything we can to help with all three pieces of that initiative. I have seen the results of immunotherapy on other forms of cancer and am entirely impressed with what I can only describe as seemingly miraculous outcomes.

Supporting CFCF and CCF

One part of that support is a series of articles I am working on about immunotherapy, how it works and what the results have been with other cancers. I hope those pieces will encourage people to donate to Caring for Carcinoid’s efforts. Certainly, whatever money I personally can afford to send their way will head in that direction. And I will offer whatever other resources I can to that cause–including letter-writing and helping with other fundraisers they put together.

I want to do everything we can to help…

The Carcinoid Cancer Foundation is another organization I want to find more ways to help. Their work on raising awareness, especially about the AdVince and Seneca Valley viruses, but also in more general terms, needs to have greater support. We can have all the cures in the world, but if doctors and lay people don’t know this cancer exists–and know to consider it–those cures will not get to the people who need them.

Supporting and encouraging the grassroots

Equally important are all the smaller foundations working with regional NET cancer centers in the way we do with the program at Dana-Farber. National and global organizations are important, but so are more local operations aimed at supporting more local efforts. Reports last year that at least one NET cancer program was having to consider down-sizing because of money issues make my blood run cold. We need to help every NET cancer center get the funding it needs to keep doing the research and treating patients.

We can have all the cures in the world…

Ideally, I would like to see every National Cancer Institute Cancer Center have a fully funded NET cancer program. Patients should not have to travel 500 miles or more to find a fully qualified interdisciplinary team. That is too often the case. But when we do not have enough experienced doctors and we do not have the ability to fund that many centers, we have to make do with what we have–at least for now. Making sure that the centers we do have get the funding they need to do what they need to do is the necessary first step to getting the second part of that equation solved.

Forming a new alliance

To that end, I’ve already recruited people at the Boston Marathon Jimmy Fund Walk to talk with groups or individuals who want to set up something similar in their area. And I am certainly willing to talk to anyone at any time about how we have done what we have done within the Jimmy Fund Walk to aid DFCI’s program.

Patients should not have to travel 500 miles or more…

Further, I am willing to talk to anyone about how we set up Walking with Jane and any of the things we do. We all need to help each other race money and raise awareness in any way that we can. To that end, I propose we create a Carcinoid/NETs alliance aimed at bringing all of the organizations raising money and awareness for this disease so that we can all learn from each other and share ideas. And rather than gathering for a conference, I suggest we use Skype, Facebook,  and other social media for our interactions. That way, we can “meet” with greater frequency and provide each other with greater support.

Developing a role

I in no way intend for this idea to replace the NET Alliance or NET Cancer Day. Those groups have their own work to do. But I see a need for more grassroots level communication and support than we have now. Those of us at the lower and more regional end of the spectrum need to communicate better with each other about what we are trying to do and how we can better support each other’s efforts.

…provide each other with greater support.

Last fall, I published long series of articles about marketing NET cancer. These first four pieces on our goals for 2014 are part of the plan for how we implement the ideas put forward in those articles. In the final parts of this series, we’ll look at our goals for our Relay for Life team and some of the paperwork involved in making Walking with Jane fully functional that still needs to be done.