Dreams of a future die
Jane was too young to die. Jane was 56. I was 58. We were preparing to leave teaching to spend time with each other. We planned to write some books. We had dreams.
Things are better than they were in 2010…
We were not done living or learning or teaching or dreaming. Neither are most of the NET cancer patients I meet. They have careers that matter, children that matter, dreams that matter. Instead, most face a years-long struggle against an incurable disease that slowly strips them of their dignity, as well as their energy and purpose.
Dreams still nightmares
We are still in the dark ages when it comes to NET cancer, as Jill Watson so ably points out in her comment on yesterday’s post. We have made progress, but not enough to make a big enough difference,
We have no cure. We have few ways to slow the progress of the disease. We have few ways to improve patients’ quality of life. We still lack any reliable means of detecting the disease early enough to make a curative difference.
Dreams of greater awareness
Most primary care doctors still have never heard of NET cancer. Too many of those who have, think of it as, “a good cancer to get.” They see it as slow-moving and tout the idea you can live for years with it. They don’t experience what those years can be like.
Too many oncologists know too little about the disease as well. The things they know are what they heard in medical school. They’ve rarely actually seen a case and are equally rarely up on the latest research or new standards of care.
Changing reality
But 2010 really was a turning point in the treatment of NET cancer. In June of that year, the FDA approved two new drugs–everolimus and sunitinib–for pancreatic NET. Those were the first new drugs approved for NET cancer in nearly 20 years. Those drugs have since shown an impact on other forms of NET as well.
Sandostatin–the month-long form of octreotide–would soon be joined by lanreotide, reducing octreotide to a mid-month rescue shot for many patients. One of the worst parts of my day was watching Jane inject herself in the belly with octreotide. For many–though not all–patients, those days were drawing to a close.
Moving from dreams to reality
Based on a Phase 3 trial, telotristat etiprate should receive approval in the next few months. It also addresses NET cancer symptoms and seems to slow the progress of the disease for many patients.
While for patients in Europe–or those with the means to get there–PRRT had been an option for many years, trials of that radiation treatment had not yet begun in the US when Jane died. The successful completion of those trials in recent months should bring FDA approval shortly for an even better form of that therapy. Again, it doesn’t work for everyone–and is in no way a cure–but its impact on quality of life for many is significant.
Delaying tactics, not cures
Patients with other forms of cancer had tried liver embolization in 2010, but no NET patients had. Today, for those with liver mets, bland, chemo, and radiation embolization therapy have become fairly common–and fairly successful. But, again, not for everyone.
To patients and their families, none of those things is enough. Each improves quality of life. Each increases longterm survival. None of them represents a cure. Nor do the early returns on other therapies in the works.
Diagnostic dreams could fuel a cure
We do have one therapy that offers a chance of a cure: early surgery. But it is rare the tumors are found early enough for surgery to do anything more than what the other therapies do: extend life and improve the quality of that life. In 2010, we had no decent means of detecting the presence of the cancer before it reached an advanced stage.
Today, we are a little better. Jane’s tumors were invisible to every scan her doctors did before the tumors exploded into her liver. Within two years of her death, the PET octreoscan–using octreotide as a contrast agent–made many tumors more visible. Recently completed trials of the Gallium-68 scan are even better.
Dreams of a simple test
But for those tests to reveal the tumors, a primary care physician has to know enough about NET cancer to know to order those tests. What we really need is an inexpensive drug test that could become as routine as the test we use to check for prostate cancer. That kind of test would be a game-changer.
None of this offers any real solace to those fighting the disease at this moment. As Jill points out, the slow pace of getting an idea from the lab to every patient’s bedside is agonizing. But things are getting better. There is far more in the pipeline than there was in 2010. And every slowing of disease progression buys time for patients to get to that next treatment.
Tomorrow is coming
But there needs to be more. That can’t happen without more doctors, more researchers, more lab space, and more NET cancer centers–all of which requires more resources than we have now.
Tomorrow, we’ll look at what resources we had compared to what we have now. Things are better than they were in 2010–but not as good as they need to be.
