Dream Big, Hope Big, Relay Big
Relay for Life‘s national theme this year is “Dream Big, Hope Big, Relay Big, Why Not” and there is no one with bigger dreams or greater hopes this year than those of us fighting NET cancer.
It won’t be quick and it won’t be easy.
Our dreams are big because of a virus locked up in a freezer in Sweden. Our dreams are big because we finally have lines of carcinoid cells growing in vitro. Our dreams are big because we are on the verge of proving an animal model. Our dreams are big because we have begun processing the DNA of the 1000 NET cancer patient blood samples we have in hand and can soon hope to have the genome unravelled. And that will mean we will finally have the knowledge we need to begin really targeting this thing.
Dinner with NET cancer
I had dinner tonight with a woman who has just finished writing a book on the frustrations of diagnosing cancer. She had never heard of NET cancer before but she understood the madness of a cancer that does not play by the same rules as the rest of its siblings. She works with ACS CAN, the lobbying branch of the American Cancer Society. When we talked about the money issues those of us dealing with NET cancer have to deal with she understood with the knowledge that comes only from trying to scare up money for what sometimes seems impossible causes.
I am not holding my breath.
But we all have to remember where things were 99 years ago when the precursor of the ACS was just getting started. In those days a cancer diagnosis was nearly always a death sentence–and a cure for any cancer had all the makings of a fairy tale. As recently as the 1980s childhood leukemia killed four out of five victims. Today nine out of ten childhood leukemia patients can look forward to normal lifetimes.
Funding the NET cancer eater
Those fighting the NET cancer battle still face huge obstacles before we reach that level of success. Even if we started a Phase I trial of the virus in that Swede’s freezer tomorrow–and it fulfilled its promise perfectly–it would still be ten years before it was fully approved for patient use outside of trials. We don’t currently have the money to start even the European trial.
…a cancer diagnosis was nearly always a death sentence
Several groups are trying to jump-start that process through the Oncolytic Virus Fund. We are all hoping someone with truly deep pockets will step up and buy the naming rights to the virus by ponying up the money to fund the trials. I am not holding my breath.
NET cancer’s long road to a cure
Personally, I suspect we will have to go at this a few dollars at a time. There will not be government money for this. There will not be drug company money for this. There will only be donations from private citizens. Most of them will know someone who either has NET cancer or has died of it. They will donate what they can and–eventually–we will have enough money to fund those first trials.
Our dreams are big…
And if we are fortunate, those initial human experiments will be successful. Then we will set about coming up with the money for the Phase II trials. And if those meet with success we will work to find the money for the Phase III efforts.
It won’t be quick and it won’t be easy.
The battle against NET cancer never has been.
