Walking to a cure
In pursuit of a cure for NET cancer I walked 26.2 miles Sunday. In pursuit of that cure–and powered
by people supporting that walk–I raised over $6000 in the preceding 30 days by writing letters and stuffing envelopes. As of this morning, all my efforts had brought in $10,700.
This morning I read about a new Phase I trial run at the Dana-Farber Cancer Institute by Dr. Jennifer Chan. It looked at the feasibility of combining everolimus–one of two new drugs approved for NET cancer last year–with pasireotide–a new drug that blocks more receptors than octreotide. The trial was successful to the extent that it demonstrated people could tolerate both drugs simultaneously without negative reactions and that most of the small group of patients had tumor reduction and reduction of symptoms.
I’m not giving up.
The study conclusion was essentially that a Phase II trial makes sense.
I won’t be surprised if the Phase II trial works out as well–and that the end result will be that we will have a new drug combination that works better at slowing the progression of the disease than what we have now.
Getting beyond treating NET cancer symptoms
But it is equally clear that this will not be a cure for NET cancer. It will help with the symptoms, it will slow it down, but it will not stop the tumors from growing and spreading.
Last week I wrote about a potential cure for NET cancer that is sitting in a freezer in Sweden. I now know the group in Sweden is reputable and that the person in charge is among the leaders in NET cancer research in Europe. And I am also fairly certain that there will be a Phase III trial based on Dr. Chan’s research long before we get a Phase I trial of the Swedish virus–barring someone with deep pockets stepping into the fray.
…it is a 7-10 year process from the time we start.
The problem is not that there are not doctors and scientists to test the virus. They would if they could in a heartbeat. The problem is one of money. A Phase I trial will cost $1.6 million. The virus cannot be patented, so no pharmaceutical company is willing to pony up the cash for the trial because they will not be able to turn a profit on it. The government of Sweden does not pay for Phase I trials–no government does: Phase I trials are too speculative. Only a small percentage of drugs that work in animal models turn out to work well enough in humans to be worthwhile.
The NET cancer mountain
I worked 8-12 hours every day this summer on raising money for NET cancer research. I wrote to everyone I knew. If I could duplicate the last 30 days every day for a year I would raise $72,000. That is a far cry from $1.6 million. And that is just the cost of one Phase I trial in Europe. My understanding is the FDA would require another Phase I trial in the US as part of its approval process.
Then we would need money for Phase II and Phase III trials. And then we would have to find a drug company to manufacture the virus in quantity once the thing had FDA approval.
The problem is one of money.
Just in terms of time, it is a 7-10 year process from the time we start.
And every year will be a scramble to find the money to keep the research going–assuming the first trial works at all: that the virus doesn’t turn out to have awesomely bad side-effects and that it works well enough to actually kill the tumors.
Time to start climb
I’m not giving up. Last year at this point we had raised less than $7000 for NET cancer research–and just over $11,000 total. We’ve raised double that amount so far this year.
I won’t be surprised if the Phase II trial works out…
That gives me hope. People thought that was a stretch when I said it a year ago. It hasn’t been easy, but we’ve gotten there.
And we’ll get to the next set of goals as well. We just have to keep thinking further and further outside the box.
We can kill NET cancer.
