Dear Santa,

NET cancer patients and researchers have been very good this year. Patients have quietly suffered the diarrhea, the hot flashes, the insomnia, and all the other symptoms of their disease. Researchers have done all they could with the tiny resources available, continuing to push our knowledge of NET cancer forward despite knowing that most of the population has no idea their special portion of Hell Studies exists.

…a cure is what we really want and need.

So how about a few extra presents in the stockings of these patients, caregivers, and researchers. Here’s what we’d like them to find in the year ahead.

1.  Broader knowledge of NET cancer among doctors

Santa, we are doing a better job of teaching new doctors about NET cancer in pre-service training, but many older doctors have still not really heard of the disease–and even those who have too often dismiss it as too unlikely to order the bothersome and expensive tests we have.

…help them out anyway you can.

We need to include sessions on NET cancer at major medical conferences. We need to set up regional conferences aimed at teaching primary care doctors the latest information we have about the disease. We need to get big, multi-doctor offices and care providers to make NET cancer a regular part of their in-service programs.

We need doctors to stop thinking of NET cancer as a zebra and start thinking of it as a horse disguised with stripes.

2.  Broader public awareness of NET cancer

Santa, if doctors know too little about NET cancer, the general public knows even less. And since we do not have any clear idea how many people actually have the disease, that could be a major problem. We have no idea how many people die from the disease and the damage it does without even knowing they have it.

Santa, this disease killed my wife.

It could be a lot. All we know for sure is that with the poor diagnostic tools we have, we are still diagnosing 12,000 people with NET cancer every year–about the same number of people we diagnose with cervical cancer. We have about 120,000 we know of who are living with the disease. But there could as many as three million others out there, according to one estimate.

There are four public service announcements sitting on a desk at CBS in New York. Getting even one of them on the air could be a big help. But we need every media outlet we can get helping get the word out to the general public.

3.  A better way to diagnose NET cancer

Santa, if we could reliably and inexpensively test for all the different forms of NET cancer quickly and easily we could save a lot of lives and a lot of suffering. Right now the only way we have to cure the disease is surgery. But surgery only works when the disease is very young–and often asymptomatic. Most of the time we only discover NET cancer that early by accident–a person goes in for an appendectomy and the surgeon discovers a NET cancer tumor.

…research is expensive…

We have a blood test for 5-HIAA currently in trials–and so far it seems to work pretty well. We need those trials to go well. But even if that method can replace the current urine test, it will only detect the tumors producing serotonin. We need tests for all the other forms of NET cancer as well–or a single test that will mark them all.

The new Gallium scans are a help, but they are pretty expensive and doctors still have to order the tests–see #1. We need something simple and cheap.

4.  More money for NET cancer research

Santa, last year we raised and spent less than $4 million on NET cancer research in the US. We accomplished a lot with that money. We started unraveling the DNA of 1000 NET cancer patients, developed new NET cancer cell lines in the lab, worked to create an animal model to speed up the testing of new drugs, worked on developing the 5-HIAA blood test, leveraged a couple of trials of new drugs and new drug combinations…

…we need to double the spending on NET cancer…

But Ron Hollander at the Caring for Carcinoid Foundation thinks it will take $100 million to find the answer to NET cancer. That means it will be 25 years before we get to a cure at this rate–and I think Ron’s estimate is pretty conservative. We’ve spent billions on breast cancer–and while we have made progress, we still don’t have it beaten. And breast cancer is pretty simple compared to how NET cancer operates.

We all agree that we need to double the spending on NET cancer–and then double it again and again. We have an increasing number of avenues we need to investigate–and all of them are going to cost money. Both CFCF and Walking with Jane want to double what we raised this year next year. We need everyone to do that. But we are going to need lots of help getting there.

…it will take $100 million to find the answer to NET cancer.

The Oncolytic Virus Fund and iCancer need your help as well. They are trying to raise a minimum of $1.6 million for a Phase I trial of a virus that eats NET cancer cells. Santa, so far they have raised well less than $200,000 between them.

5.  More knowledge about NET cancer DNA

Santa, the Dana-Farber Cancer Institute is running the DNA in blood samples from 1000 NET cancer patients as fast as they can fund the work. Knowing what those folks genetics have in common may prove an important step in our understanding of NET cancer. They hint they have found some things already that will make a difference–but need to get further into the run before they are sure.

We need something simple and cheap.

That research is expensive–that’s part of the reason we need a lot more money going into research on NET cancer. And we also need to run the DNA of the actual NET cancers because that will help unravel how the disease can be attacked as well.

Santa, make sure there is something special in those researchers’ stockings this year that will help us destroy NET cancer.

6.  New ways to ease the symptoms of NET cancer

Santa, this disease killed my wife. I know we all have to die of something, but her death was an awful thing to watch. The pain, the insomnia, the diarrhea all conspired to strip her of every ounce of dignity in the last days of her life. We desperately need more and better drugs and techniques to ease the awful symptoms of carcinoid syndrome. That syndrome also makes recovery from surgical procedures more complicated.

…the general public knows even less.

We have some drugs in trials right now. But we need more of them. And we need, especially drugs for the significant number of patients what we have has little of no effect on.

7. A cure for NET cancer

Santa, we desperately need a cure for the advanced stages of this disease. There are lots of people out there for whom surgery offers no real answer because their NET cancer was too advanced when it was discovered. It had already spread to the liver and to other parts of the body. For some, we can slow the progression of the disease and ease their symptoms. But that is not true for all of them. What is true for all of them is a slow descent into the end-stage of this disease–a place that is agony for both them and their loved ones.

We need doctors to stop thinking of NET cancer as a zebra…

The oncolytic virus in Sweden might work. And there is a woman in Seattle working with reprogramming t-cells for other cancers whose method might be applicable to NET cancer. Or maybe there is something else we have not yet thought of. But Santa, a cure is what we really want and need.

…patients and researchers have been very good this year.

Santa, NET cancer patients need these gifts a lot more than I can tell you, so help them out any way you can.

Say hello to Mrs. Claus, the elves and the reindeer. I hope the trip goes well this year. And don’t forget the pick-up at the Island of Misfit Toys. They all need a home this Christmas.

Your friend,

Harry, the NET Cancer Walker