Dream under construction

I dreamed of Jane last night. We were walking through a construction site. Old buildings were being torn down. New buildings were going up. We got separated at one point and I remember looking for her–trying to find her–and knowing that I would. And then, there she was.

At least thirty-three people still die from NET cancer every day…

This was the second time in a week I dreamed of Jane. The first time was a perfect metaphor for the idea of universal unconditional love. This time it was an apt metaphor for the state of NET cancer research. The old status of the disease as so rare no drug company could be counted on to fund anything is being replaced by increased interest on many different fronts.

A dream becoming real

In the 37 months since Jane’s diagnosis–in the nearly 34 months since her death–much has changed. We still are years from a cure–years from being able to do anything more than slow the disease down a half a step. NET cancer is still a penniless orphan compared to the better-known and better-financed forms of cancer.

 …NET cancer is still a starving orphan at the cancer funding table.

But the amount of money being spent on research into NET cancer has more than doubled since Jane’s death. The FDA has approved two new drugs for the treatment of pancreatic NET  cancer. There are more than 75 new treatments in the pipeline that offer varying degrees of hope–ranging from new drugs to alleviate the symptoms to a range of treatments that may offer hope of a cure.

Dream detection, Dream cure

We now have two viruses–one already in trials and one preparing for its first trial–that essentially eat NET cancer tumors the way a child in a growth spurt goes through whatever food he or she can find. We have a better understanding of when to do surgery and how to handle the stages before and after surgery. We have non-surgical methods of treating tumors in the liver that can all but eradicate those tumors–and sometimes take them out completely.

We’ve begun DNA studies of people with NET cancer…

Detecting the disease remains critical–but difficult. Even here, however, we are making progress. A blood test that replaces the cumbersome 24-hour 5-HIAA urine test is in trials. We have new methods of scanning that can light up the previously dark–nearly invisible–matter of NET cancer tumors.

Researching the dream

And our understanding of the disease is far greater than it was when Jane dreamed of defeating NET cancer. Researchers have grown NET cancer cell lines–though we need more–so therapies can be tested first in petri dishes rather than patients. We’ve begun DNA studies of people with NET cancer to look for genetics connections that will further help researchers understand how the tumors form and who is most at risk.

Detecting the disease remains critical–but difficult.

But there is still much more to do. Of all the treatments that go into trials only the tiniest fraction are ever approved for general use in patients. There are lots of dead ends in the research process.

The dream and the nightmare

And for all that research funding has improved, NET cancer is still a starving orphan at the cancer funding table.

We still are years from a cure…

Perhaps the greatest obstacle we face is still the lack of awareness of the disease–and that is changing only very slowly. Patients still face numerous wrong diagnoses–some still never get the correct diagnosis even after the disease kills them.

The dream lives on

Thirty-three people still die from NET cancer every day–and that number is likely growing because the number of diagnoses is growing. I heard an estimate last week that as many as 15,000 Americans will receive a NET cancer diagnosis this year. Better detection may be part of the reason, but no one can say for sure.

…an apt metaphor for the state of NET cancer research.

But our dream of a cure for NET cancer continues to move forward. Our dream of a world without NET cancer continues to move forward. Our dream that the nightmare of this disease will end with long and healthy lives continues to move forward. It is what Jane would want. It is what I want, too.