Reviewing NET cancer research

I spent part of my morning reading a review paper on NET cancer by Diane Reidy-Lagunes and Raymond Thornton from Memorial Sloane-Kettering Cancer Center in New York. That institution carried the water for NET cancers for as long time when no one else was really doing much of anything on the disease. It remains one of the premiere groups working on NET cancer today.

…at best we have been working in pre-dawn light.

The paper, Pancreatic Neuroendocrine and Carcinoid Tumors: What’s New, What’s Old, What’s Different, illustrated the distance we have come in finding treatments for this horse disguised as a zebra–and how enormously far we have left to go. The good news is there are now significant, though not curative, treatments for pancreatic NET cancers. The bad news is those treatments rarely do much for those suffering from non-pancreatic NET cancers. It is increasingly apparent to me, at least, that while pancreatic and carcinoid NET cancers share some similarities–most specifically that both sets of tumor create excessive amounts of particular hormones–they function in very different ways otherwise. Those significant differences likely mean that drug therapies that work on one will not necessarily work on the other.

NET cancer vs. panNETs

That could mean that at some point we may come to recognize panNETs as a separate disease from NET cancer in general. That would necessitate two research tracks and individual funding sources for each. Suddenly the financial issue moves from $100 million for a NET cancer

cure to $200 million if that should prove to be the case.

…the jury is still very much out…

That is sheer speculation on my part at this point, though. We can hope that will not ultimately prove to be the case.

Other NET cancer avenues

The study also reviews the results of liver embolization trials. Again, these seem promising, but the paper makes clear that the jury is still very much out on the effectiveness of these treatments. While they clearly seem to reduce symptoms and extend life, the studies have simply not been set up to really definitively answer the question of the degree to which those statements are true.

…we may come to recognize panNETs as a separate disease…

The completed studies on RPPT have been equally inconclusive for much the same reason. The results of the ongoing trials in Houston may go a long way to answering those questions, but the results of that trial are still somewhere in the future.

New light ahead?

The paper does not address the ongoing DNA research Dana-Farber has begun on NET cancer. That is, in large part, because that research had not really yet begun at the time the paper was published. But the paper underlines the importance that research may well have in opening up new lines of research. The truth is we know so little about how NET cancer operates that at best we have been working in pre-dawn light. At worst, we have been working in midnight darkness.

…finding treatments for this horse disguised as a zebra…

The results of that research are still some months–and some dollars–away. But it will certainly result in a much better understanding of NET cancer and how it grows. We can hope that understanding will lead to to cures for all the varieties of NET cancer.

Support for NET cancer patients

In the last 23 months I have met a lot of NET cancer patients and their caregivers. It is always hard to know what to say to either one. I want to be supportive. I want to tell them it will be all right. It is what I am supposed to do.

Be there when they need you–even when they say they don’t.

And I do try to be encouraging. The truth is that if we can buy patients another year or two we may be able to buy them another year or two after that and another year or two after that. The science is evolving and things that were barely on the drawing board when Jane died are beginning to bear interesting fruit.

NET cancer progress equals hope

It is what kept Jane and me going: if we could get her to the heart surgery that would buy her the time and the strength for the liver embolization. And if we could get her through that it would buy her the time and the strength for a liver transplant.

You will have dark moments.

And the liver transplant would surely buy her enough time and strength for the PRRT treatments or surgery on her intestinal tract to scoop out the tumors there. And that would buy the time for the researchers to find a real cure for the disease. And regardless, each step would improve her quality of life–give her relief from the symptoms and let her live a largely normal life in between the procedures.

NET cancer kills

But there is another truth about NET cancer: people die from it–people die from it every day. On average, 33 people die from NET cancer in the US every day. That’s 231 people a week, about 1000 people a month, and about 12,000 people a year.

…she was fighting NET cancer the entire time.

And on the average day, 33 new patients are diagnosed with the disease–just enough to keep the number of patients steady at about 120,000.

Some people will look at that number and say, “Well, that means people live ten years after they are diagnosed.”

No NET cancer promises

And some do–some live even longer. But some are dead within months–even weeks–of their initial diagnosis. Jane died just four months after she was told she had NET cancer.

Many cancers are relatively easy to diagnose.

But how long a person survives matters a lot less than the poor quality of life they may endure before death finally releases them. There are years of insomnia and hot flashes and diarrhea to be endured. There is bloating and painful gas that erupts from nowhere and taints every potentially positive experience with pain and embarrassment. All of this leaves the patient cranky and short-tempered.

And if the caregiver responds in kind it can destroy every positive aspect of the relationship. There have been books written about the role of the spouse as cancer caregiver and everything in them applies just as well to the NET cancer caregiver. But there are things the NET cancer caregiver deals with the breast cancer caregiver cannot even imagine.

The NET cancer problem

Many cancers are relatively easy to diagnose. The average number of wrong diagnoses for a NET cancer patient is three. Jane had five. Once most cancers become symptomatic we either cure you quickly or you die quickly. Jane was symptomatic for 30 years–30 years of bloating, painful gas, frequent diarrhea and insomnia, of timing her day around when it was safe to eat–and what and how much it was safe to eat at that particular point in the day.

Jane died just four months after she was told she had NET cancer.

And even when she did everything right there were times it all just exploded into pain that was agonizing to watch. I knew, eventually, there was nothing I could do for her that would help other than give her space and time and let her know I loved her.

Twenty-five years of NET cancer

Including our courtship, we were together for nearly a quarter of a century–and she was fighting NET cancer the entire time. That meant I was fighting it too, albeit in a very different way than she was. And when it killed her, it killed a part of me as well.

…33 people die from NET cancer in the US every day.

Sometimes I wonder what our life together would have been like without the cancer that shaped so much of our lives without our knowing it. Honestly, I can’t imagine that any more than I can imagine what the next 25 years of my life will be like without her. Our life together was a thing of incomparable beauty to me, except for the ending–and others have told me that, too, was a thing of rare beauty.

Advice for NET cancer spouse

So here is the best advice I can give to the spouse of a NET cancer patient.

It is what kept Jane and me going…

First, be patient. Remember that when they say something that hurts you to the very core it is not them but the cancer that is talking. The pain is going to leak out one way or another. Oscar Wilde once said that we revenge ourselves on those closest to us. I think that is because they know we will not strike back, regardless of the provocation.

Second, be positive. You will have dark moments. Your spouse will have dark moments. You have to be positive for them no matter how dark you feel. Even a ten percent chance is better than no chance at all. Your spouse may get angry about you being positive–but do it anyway.

Bravery called for

Third, be brave. Ask doctors the questions neither of you want to ask, but that you need to hear the answers to. Fight for your spouse’s life with every fiber of your being. But also, be brave enough to let them go when a fighting chance truly becomes no chance.

 The science is evolving…

Finally, be there. Be there when they need you–even when they say they don’t.

NET cancer is a killer, but no one should have to face it alone.

NET cancer memories

I usually update this site every day. I either add a link to some new piece of information about NET cancer or write a blog post about Walking with Jane or my reaction to the latest bit of research or my feelings about the struggles everyone involved with this disease faces.

I don’t want anyone to go through what Jane did…

But for almost two weeks I have done none of these things. For reasons I do not entirely understand I am suddenly reliving everything about Jane’s last days fighting NET cancer and the carcinoid attacks it spawned as she tried to recover from heart surgery to replace the valves in the right side of her heart that the excess serotonin had destroyed. Those memories have left me too beaten to face anything more complicated than a relatively upbeat novel–and sometimes even that has been beyond me.

In fact, even writing this today is proving a struggle.

Jane’s last NET cancer battles

December 10 I will face the second anniversary of Jane’s death. Eight days ago was her birthday–and the second anniversary of what we now know was the first in the series of carcinoid attacks that eventually would kill her. Ten days ago was the second anniversary of the heart surgery that lasted four hours longer than expected because the damage the serotonin had done to her heart was so much worse than we had expected.

There is no cure for NET cancer right now unless…

But today was a bright spot. It was Thanksgiving Day and–after a night that was touch-and-go for a while–so touch-and-go that they found another room for me to sleep–Jane had greeted me with a big, “I love you hubby” that washed all the darkness and foreboding out of me. We arranged for her father, sister, cousin and two friends to come visit for a couple of hours. Then we shared Thanksgiving Dinner: a cup of chicken broth for her and a bowel of pumpkin soup for me.

It was the best Thanksgiving we ever had.

Two days later, she was in a coma again–and again I had to decide whether to let her go or not.

NET cancer decision points

You do not know what that is like if you have not had to do it. TV shows make it look easy. So do movies. Reality is something else entirely. It was a decision I had to make three times. It weighs on me even now–even having concluded logically that in each case I made the right decision given what I knew at the time–what all of us knew at the time.

But I wish none of it had happened.

This is how little we knew at the time: On December 10, as I held Jane’s hand and waited for her to die, her doctor told me that Jane’s case had essentially doubled what we knew about NET cancer and carcinoid syndrome. Among the things we did not know was that every time Jane started to rehab her heart the exercises triggered a new carcinoid attack. The tumors in her liver flooded her body with serotonin that crashed her blood pressure and her respiratory system.

If we had known that, she would have died November 22. I would not have put her through the emotional roller-coaster of the remaining 18 days of her life. But I did not know–and she did not know–none of us knew.

One NET cancer’s impact

There was much that came out of those 18 days that was good for our knowledge of NET cancer and for the lives of the people Jane came in contact with. Jen Chan, her oncologist, sent me a note this week. “I recall Thanksgiving-time two years ago with you and Jane as if it was just the other day,” she said. I think about all the patients she has had since Jane and know the impact my wife had on Jen was anything but small.

One of her nurses sends me a card a couple of times a year, and I know that many of those remember her well. I ran into her heart surgeon a few months ago–a man who does 2-3 heart surgeries a day–and he, too, remembered Jane’s battle.

You do not know what that is like if you have not had to do it.

I think about all the work Walking with Jane has helped to finance and–at times–inspire, and know that has not been a small thing either.

But I wish none of it had happened.

NET cancer reality

So here is the hard truth–the truth no patient or caregiver wants to hear or deal with.

There is no cure for NET cancer right now unless we catch it really early. There are some hopeful things on the horizon, but at this point that is all they are.

It was the best Thanksgiving we ever had.

That means that many of you are going to face what Jane and I did. We were lucky in that we had talked about end-of-life issues. We thought we knew what we were looking at. But we were wrong.

We think of death as a black-and-white issue. We think of DNRs as black-and-white as well.

They aren’t. They are a thousand shades of every color in the rainbow–and you cannot hope to anticipate all of them.

NET cancer and the end

Have the conversation anyway. You need to have as good an understanding of where the lines are as you can.

 I am suddenly reliving everything about Jane’s last days…

But, in the end, if you are the primary caregiver, you are going to be alone in a room full of people who are waiting for you to make a decision about whether or not your spouse goes on living or dies. And even when it is clear-cut–as it was for me on December 9–it will likely be the most emotionally wrenching decision you will ever make.

If you want to know why I spend my days trying to kill NET cancer, this is it: I don’t want anyone to go through what Jane did–or what I did–at least not about NET cancer.

Getting NET cancer on the radar

One of the things high on my NET cancer agenda is raising awareness about the disease with the general public as well as with primary care physicians. To that end, I wrote four scripts about a month ago that I shared with people in the field. Response to the scripts from them have been very positive.

Now I’d like some input from regular people–and some help in getting them turned into usable video and audio spots.

Please let me know what you think. And if you can help turn these scripts into real product or help get that product on the air, I’d really like to hear from you.

NET cancer Script 1:

My wife and I had plans…

But she died six months before we were supposed to retire—and just four months after being diagnosed with a cancer her doctor had never heard of: Neuroendocrine Tumor Cancer.

We think she’d had it for 30 years.

But it’s hard to detect. It looks like irritable bowel syndrome in one patient, early menopause in another, heart disease in a third—in fact NET cancer can produce almost any hormone your body produces—in quantities that screw up your body chemistry.

NET cancer—it’s a killer.

Closing Screen: Learn more at walkingwithjane.org, carcinoid.org, or caringforcarcinoid.org

NET cancer Script 2:

Do you have irritable bowel syndrome?

Have you tried the diets and the medications—but still get bloating, gas, and diarrhea?

(Cut to symptoms screen)

Maybe you don’t really have IBS.

Maybe you have Neuroendocrine Tumor Cancer.

If you have two or more of these symptoms, talk to your doctor about NET cancer.

That conversation could save your life.

NET cancer—it’s a killer.

Closing Screen: Learn more at walkingwithjane.org, carcinoid.org, or caringforcarcinoid.org

NET cancer Script 3:

November 10 is NET Cancer Awareness Day.

Never heard of it? Neither had my wife’s doctors. One called what she had irritable bowel syndrome, another called it anxiety, a third told her it was all in her head. This went on for 30 years.

Less than a year from our retirement, someone finally got it right. Four months later, my wife was dead.

Do you have two or more of these symptoms? Talk to your doctor about NET cancer. It could save your life

NET cancer—it’s a killer.

Closing Screen: Learn more at walkingwithjane.org, carcinoid.org, or caringforcarcinoid.org

NET cancer Script 4:

Have you been diagnosed with Irritable Bowel Syndrome?

(Cut to symptoms screen)

Do you have two or more of these symptoms?

You could have NET cancer.

Talk to your doctor. That conversation could save your life.

NET cancer—it’s a killer.

Closing Screen: Learn more at walkingwithjane.org, carcinoid.org, or caringforcarcinoid.org

*********

With your helpful comments and knowledge, we can take the next big step toward getting NET cancer on the ropes and killing this cancer once and for all.

NET cancer and Death’s quiver

I have had a pretty dark few days on both the NET cancer and life fronts. Saturday I attended a memorial service for a former colleague and friend who died of brain cancer. I drove down with a former student who was one week out of the hospital following complications with her own cancer problems. I was bombarded all weekend with the certain knowledge that life is fleeting and uncertain.

We have no choice…

And yesterday reminded me about how little we seem able to take even the NET cancer arrow from Death’s quiver.

NET cancer research funding

I had lunch yesterday with Ron Hollander, the director of the Caring for Carcinoid Foundation. We talked about a number of things that were very encouraging: the progress of the Dana-Farber NET cancer genome project, the positive reaction of someone at CBS news to the PSA scripts on NET cancer I wrote a few weeks ago, some ongoing work at Johns-Hopkins in Maryland, the dovetailing of a drug currently in trials with a newly discovered pathway in NET cancers…

Next year’s target is $156,000.

But then the conversation turned to the question of money–and there the news was less calming. At one point, Ron called total funding for NET cancer “barely a rounding error” on what we spend on breast cancer. CFCF’s goal, he said, was to double what they raised this year next year. He told me they were close to negotiating the same two-for-one matching opportunity they closed last year with–and hope  to be able to put together a second matching program later. He talked about a number of small groups doing fundraising similar to ours–walks, dinners, golf tournaments–and all those small efforts do add up. By the end of December CFCF will have raised about $1.25 million.

CFCF’s portion of NET cancer fight

That’s not bad for a small foundation with a full-time staff of three operating out of an office only slightly bigger than my bedroom. The foundation pays no salaries–those get picked up by the board of trustees–so all the money they raise goes straight into the NET cancer fight.

That amounts to $2.5 million.

But that small foundation provided more money for NET cancer research than anyone else in the country–including the federal government–last year.

WWJ’s NET cancer fight

Walking with Jane has a full-time staff of one–me. I pay myself nothing and we operate out of a room in my house. So whatever we raise goes straight into the fight as well. This year we expect to raise or generate somewhere between $73,000 and $93,000. The lower figure is just under double what we raised or generated a year ago.

…an office only slightly bigger than my bedroom.

Next year’s target is $156,000.

And I have no idea how we are going to get there without even more help than we had this year.

NET cancer needs more than money

Ron wants to double what CFCF raised this year next year. That amounts to $2.5 million. CFCF is going to need lots of help getting there as well

But even if we both reach our goals, what we spend on NET cancer will still not amount to a rounding error.

“barely a rounding error”

We both agreed we need more people to be aware of the disease. We both agreed we need a big name to come forward as a spokesperson. We both agreed we need to have bigger–and more visible–events.

All three of those leave us at the mercy of others right now. When the biggest foundation in terms of income has a total full-time staff of three, running a medium-size amateur golf tournament is about the limit of what we can handle, assuming we can find enough volunteers to fill in the holes.

No NET cancer alternative

Of course the alternative is to do nothing more than we are doing now. But 33 people died today of NET cancer. Tomorrow, another 33 will die of it–and another 33 the day after that.

…life is fleeting and uncertain.

Doing what we are doing is not an option. Walking with Jane will figure out how to raise $150,000 next year. CFCF will figure out a way to raise $2.5 million.

We have no choice: NET cancer patients are counting on us to find the money to save their lives.

NET cancer ‘Zebra Movement’

NET Cancer Awareness Day is tomorrow as I write this. This is the third year in a row the NET cancer community has picked one day to really try to get the rest of the country to focus on this nasty piece of work that is NET cancer. There is an effort to get the entire NET cancer zebra herd to come together in a series of events designed to draw attention to the disease.

…the fight to kill NET cancer is an everyday affair.

Walking with Jane had hoped to launch its second Press Package tomorrow as part of that operation. Cancer in several of its other guises has stomped the life out of that idea. We will aim for December 10, the two-year anniversary of Jane’s death, instead. That’s the problem with life sometimes: you can plan whatever you’d like, but someone gets sick or someone dies or a storm comes uninvited up the coast.

But we are still trying to get everyone to turn Facebook into a giant zebra herd by replacing their profile picture with a zebra-themed picture.

The double meaning of NET Cancer Day

NET Cancer Awareness Day falls each year on November 10. It is a date that is particularly hard for me. November 10 is the last day before the madness that was Jane’s death arrived. We went to bed that night believing the next day’s trip to Dana-Farber would be routine. We would drive to Boston, I would drop Jane off at the door, park the car, meet her in the lobby, and go upstairs. There we would check in, have her blood work done, see Jen Chan, get the monthly Sandostatin injection and head home. The only thing out of the ordinary was supposed to be a short meeting with a dietician.

There was nothing left to try.

But drawing blood was more difficult than usual and Jen was concerned about the amount of fluid in Jane’s abdomen. After Jane’s injection we met with the dietician–who was worried about Jane’s albumin level. When she left and Jane got up we discovered she was still leaking clear fluid from the injection site. I wanted to have someone check on that, but Jane just looked at me and said she just wanted to go home. She had that expression on her face that even I could not say “no” to.

NET cancer surgery preparations

The drive home took over four hours. The traffic was backed up for miles. And when we finally got home I had to carry her up the stairs for the first time. I called in sick to work. It was an in-service day, but even had it not been, I would not have left her alone.

The drive home took over four hours.

The phone rang the next morning. It was her heart surgeon. They wanted to schedule the heart surgery for Monday and wanted her there Sunday afternoon. Saturday, November 14, was the last night we slept in the same bed. We had said our “just-in-case” good-byes that afternoon. Sunday, I had to help her off the toilet before we left for Boston.

NET cancer’s heart damage

Had the surgery come even one day later, I do not think she would have made it to the operating table. The six-hour operation lasted 10 hours. The damage to valves in her heart was much greater than expected.

It is a date that is particularly hard for me.

But she was a trooper. She came out of the anesthesia two hours before the expected her to. The heart healed. But the carcinoid attacks kept coming, suppressing her breathing and her blood pressure. December 9 we both stopped fighting. There was nothing left to try. December 10, she died.

The empty space

I am in no mood for a zebra party tomorrow. I want to do something to raise lots of money and make a real difference. But these months from August through December are increasingly difficult. I never finish a to-do list and the tears spring too easily to my eyes.

NET Cancer Awareness Day is tomorrow

I lost a friend last week to brain cancer. His service is tomorrow. Either before or after I will visit Jane’s grave. I will think about the might-have-beens. Then I will come down the hill to the house we built together and begin again this work before me.

For the world, NET Cancer Awareness Day comes once a year. For some of us, though, the fight to kill NET cancer is an everyday affair.

Keeping NET cancer and politics separate

In this battle against NET cancer I try to keep politics to a minimum. I wear a Walking with Jane button on my hat or on my jacket wherever I go. But Tuesday I volunteered to hold a sign at a polling place, so the button came off.

My wife is dead as a result.

NET cancer is not a Democratic issue or a Republican issue. NET cancer is a human issue.

What I need to write about tonight, however, requires me to encourage some small political action on the part of all of those who care about NET cancer.

NET cancer and the fiscal cliff

Over the next several weeks the Congress will work to resolve the tax and budget issues that constitute what people call the fiscal cliff. January 1 is the day both the Bush tax cuts expire and the sequester goes into effect. People say the combination of these two events will be disastrous for the country as a whole.

The best thing for us may be if the sequester never happens…

It will certainly be disastrous for cancer research in general—and NET cancer research in particular. The sequester calls for a ten percent cut in the budget for the National Cancer Institute. That is the group that dispenses federal money for cancer research.

Cutting NCI’s budget

I very much doubt the NCI will simply cut all its programs and grants by 10 percent. Rather, it will look at the programs it has and determine which should continue to be funded—and which should not.

NET cancer has been chronically underfunded…

After 40 years of nothing, NET cancer finally has funding from NCI for two projects. My fear is those grants will be among the programs eliminated when NCI has to find things to cut. NET cancer has been chronically underfunded for decades. Every dollar counts for us.

NET cancer, NCI and Congress

The best thing for us may be if the sequester never happens—but only if we can convince Congress to make cancer research immune from the cuts that are coming.

The sequester calls for a ten percent cut…

So I am asking each of you to write to your congressman and your senators. I am asking each f you to ask them to find a reasonable compromise in the face of this fiscal cliff—and that any compromise they do reach finds a way to protect funding for cancer research in general—and NET cancer in particular.

And I am asking that you write a similar letter to the head of NCI asking for ongoing support of the two NET cancer grants regardless of the sequester.

Counting NET cancer’s human cost

We sacrificed 40 years of progress the last time we faced cuts at the federal level.

NET cancer is a human issue.

My wife is dead as a result; Sunny Carney is dead as a result; more than 400,000 others are dead as a result; and at least 120,000 others are currently at risk as a result.

We need to make the people in Washington pay attention. We need to protect NET cancer funding.

Sunny more than a NET cancer number

There has been a tremendous outpouring of grief and support from the NET cancer community for Sunny Jennings Carney‘s family since her death Saturday. And nothing I am going to write today is intended in any way to detract from that support. Sunny’s work over the last ten years in trying to put a human face on this disease has certainly earned every tear being shed and every ounce of support her family will receive in the days ahead.

Let’s kill NET cancer

But Sunny’s was likely not the only death from NET cancer Saturday. On the average day 32-33 people who have been diagnosed with the disease die of NET cancer in the US. That is 230 people every week, 1035 people a month, and about 12,000 every year, roughly the number of cases that are diagnosed.

NET cancer’s human toll

Most of those people had husbands or wives or partners; many had children; and most had living parents. Their families endure the same grief that Sunny’s family is enduring right now. They have struggled with many of the same medical decisions and financial problems.

…money is in short supply for NET cancer research.

All of them faced the same grim reality: we have no cure for this cancer unless it is diagnosed so early that it is virtually undetectable. Then a relatively simple surgery offers the chance of a cure. Otherwise, the only option for killing this cancer is to die and take it with you. We can delay its progress. We can try to address the crippling symptoms and make them more bearable. But a cure is beyond us.

NET cancer: the orphan

Breast cancer patients, lung cancer patients, colon cancer patients, prostate cancer patients all know that everything is being done every day to find a cure for their disease.

NET cancer patients wish that were the case for their cancer. It is not.

We need a simple, reliable, inexpensive test…

The Caring for Carcinoid Foundation estimated earlier this year that finding a cure for NET cancer will cost $100 million. Last year, total funding for NET cancer research was less than $4 million, barely enough to fund a Phase I trial of a single drug or drug combination. At that level of funding we might stumble on a cure about 25 years from now, assuming funding keeps pace with inflation.

We need more than a cure

But even with a cure we face the mammoth problem of diagnosis. The average NET cancer patient is misdiagnosed three times before the get a correct diagnosis. And we have no idea how many people die from NET cancer and its complications who are never diagnosed at all. Some have suggested that number could be as high as 3,000,000.

…a cure for NET cancer will cost $100 million.

We need a simple, reliable, inexpensive test that will consistently detect NET cancer in its earliest stages. The 5-HIAA urine test is cumbersome at best, though a new blood test to detect those molecules is in development. But neither test will detect carcinoid tumors that excrete a hormone other than serotonin. The Chromagranin A blood test has a bit broader scope, but is very expensive to do, and not as easy to interpret as it might be. The development of better diagnostic tools needs to be another item high on our research agenda.

NET cancer and the economy

But research costs money–and money is in short supply for NET cancer research. That may be about to get worse, regardless who wins today’s election. The sequester that hits January 1 will cut the National Cancer Institute budget by 10 percent. The NCI currently funds two NET cancer research projects. The last time NCI faced similar cuts NET cancer lost all federal funding for 40 years.

All of them faced the same grim reality.

Income for most cancer organizations has flattened this year. The American Cancer Society, for example, saw an overall decline in moneys from its Relay for Life program. They fund NET cancer research to the tune of about $1 million a year–more than one-quarter of the total spent nationally on research last year. And given the ongoing weakness in the economy–and a possible slowdown if things really go south in Europe–individual giving may go into decline as well.

My NET cancer pledge

But the NET cancer community cannot afford to give up. Since Sunny’s death on Saturday, about 100 more people have received a NET cancer diagnosis. Another 100 have died of a diagnosed NET cancer. And God alone knows how many more have died without knowing NET cancer killed them.

On the average day, 32-33 people who have been diagnosed with the disease die…

Saturday is NET Cancer Awareness Day. I will renew my pledge that day to work to kill this disease. I hope you will, too.

For Jane, for Sunny, for all those who have suffered or died from the effects of this disease, and all those it seeks to claim in the future, let’s kill NET cancer.

NET cancer’s patient voice

The NET cancer community lost one of its most powerful and influential patient voices on Saturday. Sunny Jennings Carney ended her NET cancer journey the way nearly all those with it do: they kill their cancer by dying and taking it with them.

We will build on the foundation of your concrete footprints.

But Sunny was more than a statistic in the long, unheralded war against NET cancer. Through her blog—recognized earlier this year by the Carcinoid Cancer Foundation as one of the top five in the US on the subject—her book, The Sunny Side of Cancer, and numerous stories about her and her struggle in Pittsburgh area media, she succeeded in putting a human face on what, for most, is an anonymous cancer even doctors do not recognize when they see it.

An inspiration

She also inspired others with the disease, whether she met them in person or only through her blog. Too often, patients are passive in the presence of their doctors. For some diseases, this may make sense. But NET cancer patients need to be proactive. They have to become their own advocates. With very few exceptions, NET cancer patients know more than their doctors about this disease and the latest treatments and thinking.

…it is hard to believe she is gone.

Sunny inspired other NET cancer patients to be pro-active about their disease, not only through her writing but through personal contact as well. Next month, as part of our press package, we will publish a story about a woman from the Pittsburgh area that Sunny took under her wing when the woman was diagnosed with NET cancer in her lung. It is a moving story.

Final entries

Despite her failing health, Sunny continued to post on her blog well into October. Reading those entries, it is hard to believe she is gone. Her voice is still strong in them, though the imagery makes clear she is facing problems.

Sunny inspired other NET cancer patients…

At one point she talks about the footprints she will leave behind: “I don’t want the footprints that I worked too hard to make (to) get washed away by a wave.” She wanted her footprints to be concrete footprints and, to that end, she asked others to, “Leave some footprints for me. Continue this journey.”

Moving forward

Those words recall again to me what Jane said when she was in the hospital at the end: “Keep moving forward.”

Sunny was more than a statistic…

Sunny, we will do more than leave some footprints for you. We will build on the foundation of your concrete footprints. We will keep moving forward. We will keep raising awareness. We will keep working for a cure.

And some day, NET cancer patients will have another option for killing their cancer than dying.

NET cancer not only foe

Everyone who reads these posts—or who visits this website—knows I have good reason to hate NET cancer. But I hate cancer in general with equal fervor. I work harder on NET cancer because it took my wife—and because NET cancer gets so little money and attention in the wider world.

Research is the key to it all.

My work with the Fall River Relay for Life grows out of my hatred of cancer generally. The money we raise there does little for NET cancer–and little to raise awareness about NET cancer. But both my sister and sister-in-law are breast cancer survivors. I have former students and colleagues who have battled that, as well as friends who have fought—or are fighting—cervical cancer, uterine cancer, ovarian cancer, non-Hodgkins lymphoma, melanoma, brain cancer, testicular cancer, lung cancer, kidney cancer, bladder cancer, leukemia, colon cancer, stomach cancer, pancreatic cancer, prostate cancer…

You get the general idea. Sometimes I think that if there is a cancer I have known someone with it.

Another loss to cancer

Last night an old friend and former colleague succumbed to a brain tumor. He’d had two or three other cancers before that, but the brain cancer is what finally killed him. The last experimental treatment option failed about two months ago—and he had come home to die.

I hate that option…

David and I both wanted to create better schools. We disagreed—sometimes vehemently—about how to make that happen, but we never lost respect for each other in the process and we usually found a compromise that worked.

Cancer does not compromise. You either fight it with everything you have or you lose for certain. Even when you fight it with every weapon you can find it, still, too often, takes your life.

The death option

David and Jane both fought their cancers with every option they could find. In the end, they both killed their cancers the only way they could—by dying and taking it with them.

I hate that option—but too often it is the only option that works. Sometimes—with NET cancer and too many other cancers—it is an option we reach too quickly. And sometimes, it is the only option, period.

Cancer does not compromise.

That’s where we were 60 years ago with childhood leukemia. Today, we can save 90 percent of those who come through the door with that form of cancer.

Forty years ago, that is where we were with breast cancer. Today, too many still die from the disease, but it is not the absolute death sentence it was for the vast majority in the early ‘70s.

Searching for a cure

I cannot predict when we will begin to see real light for brain cancer or NET cancer patients. I know we have made significant progress in understanding both in recent years. But when those new understandings will present us with a cure—or even the beginnings of a cure–is anyone’s guess.

It took 40 years before Sidney Farber’s work on childhood leukemia even started to turn the corner. It may be an equally long time before we start to get a handle on either of these.

I hate cancer in general…

Or it could happen tomorrow. I have not studied brain cancers the way I have NET cancer. I don’t know if there is something similar to the oncolytic virus I have talked about here in recent weeks for brain cancers. I can’t even say the oncolytic virus will even work on NET cancer.

Research is the key to it all. Research will find a cure for brain cancers. Research will find a cure for NET cancer.