One good article deserves wide audience

I will not often use this space to highlight a specific link beyond saying we have added something new in the resources or calendar.

I make an exception for this article from a Canadian newspaper. While the focus is on a person with the pancreatic version of NEC that Steve Jobs has, the article does a really good job of pointing out how quickly this disease is growing–and distinguishing it from the erroneous idea that this is just another form of pancreatic cancer. It also makes clear that this cancer can appear anywhere–and is not limited to a specific organ.

The piece also talks about how difficult the disease is to diagnose. The piece claims that 90 percent of the time NEC is diagnosed as something else.

Here  is the link to the article: http://www.brantfordexpositor.ca/ArticleDisplay.aspx?e=3294399

Go read it. Then post your response to the forum.

One year ago today…

(Editor’s Note: Two new links were added to the Resources page today. Two new events are scheduled to be added to the calendar today.)

One year ago today, Jane and I made our first trip to the Dana-Farber Cancer Institute in Boston.

We had neen to the local clinic in Fall River already. We had learned about a drug trial, but the size of the tumors in her liver had excluded her. That rejection had put a chill in both of us: it said the disease was so far along that there wasn’t much hope.

But Jane was a fighter. She wasn’t going to give up. Nor was I. We were going to the best place on Earth for the cancer she had. We were meeting with someone who had done more than read about the disease somewhere.

We were terrified. We were terrified because we figured this would be the day the other shoe would drop—the day someone finally said to us, “Look, you have no chance. We found it too late. There is nothing we can do. You should just go home, put your affairs in order, say your good-byes, make yourself as comfortable as you can, and prepare for the end.”

Instead, we met Dr. Jennifer Chan, who was not yet Jen to either one of us, but who would become not only the best doctor we could have found, but the best friend we could have asked for.

Jen listened to Jane that day. My job was to take notes and ask the questions no one else thought of or that Jane could not bring herself to ask. We’d made a list. I ticked off each one as it was answered.

And then Jen made clear that she thought this was not a lost cause. But she wanted to have Jane’s heart checked because sometimes NEC damages the heart.

We went into that appointment convinced we had days—maybe weeks. We came away believing we had many months—and perhaps years. In fact, knowing the pace at which knowledge of everything grows these days, we both came away believing, for the first time in months, that there was a future in which Jane would beat this cancer—and that we would have a long and happy retirement together—just as we had always imagined.

Jane got her first injection of octreotide that afternoon. We knew it was not a cure. But we also knew it might slow the disease, give her her appetite back, and put the brakes on the diarrhea that was becoming increasingly debilitating.

When Jane asked me to stop to get something to eat on the way home because she was hungry  I wanted to dance into the restaurant. And when she finished her sandwich without complaint, we both practically floated home.

Three months to the day later, in a hospital room in the cardiac intensive care unit at Brigham & Women’s Hospital, Jane would wake up just long enough to hear Jen tell us that there was nothing more they could do than make Jane comfortable. Thirty-two hours later Jane would defeat her cancer in the only way she had left—by dying and taking it with her.

We learned a lot in those three months. We taught a lot in those three months. We made a lot of friends in those three months.

But I never want anyone else to learn those lessons or teach those lessons or make those friends in that way.

So this site exists; I make donations; I talk to whoever will listen; I take long walks wearing t-shirts I would never have worn before—all in the hope that through those actions there will come a day that we have a cure for this—so that for someone else out there there is a way to defeat this disease without dying and taking it with them.

Webchat on Friday September 16

Focus on Neuroendocrine Tumors Webchat

Public Event

 

http://tinyurl.com/3u6c9n6

 

Friday, September 16 · 1:00pm – 4:00pm

 

Visit the webchat link to:

-View the live event at 1pm EST on 9/16

-Submit your questions to the expert panel

-Read the transcript after the event

 

Presenters include the director of the National Carcinoid Foundation and people from the University of Pennsylvania.

By the numbers

(Editor’s Note: Two new items were added today to the resources page.)

While this site is about putting human faces on this disease, tonight let’s talk about numbers. They are as much a part of the story of this disease as the individuals affected by it.

The truth is that we don’t have any really reliable numbers in terms of how many people are affected by this disease.

We know that between 11,000 and 12,000 Americans were diagnosed with NEC last year. But we also know that before they were diagnosed they averaged three incorrect diagnoses. How many more die of the “side-effects” of the disease without being diagnosed, we don’t know.

We know there are about 125,000 people in the US living with this disease after having been diagnosed with it. But we do not know how many people are living with the disease without knowing they have it.

We know that in recent years diagnoses of the disease have increased by an average of five percent a year. We don’t know why.

We know that frequently, when a doctor finds a single case of NEC, he or she very quickly finds two or three more. We don’t know why.

We also know that the three drugs we have in the US treat the symptoms, but do not offer a cure–although the latest does seem to stop tumor growth in 65 percent of cases.

We know that there is a promising radiation treatment entering initial trials in Houston this year. We know that treatment has met with some success in Europe. But we also know that widespread use of the technique in this country will take years to happen.

We know that if you are rich enough–see Steve Jobs–you can go to Europe and get this treatment. But we also suspect that even that treatment will only extend life with the disease–not cure it.

We know that the National Cancer Institute alone spent more than $600,000,000 on breast cancer research last year.

We know that we spent less than $2.5 million total on NEC research last year.

We know that a lot more people will be diagnosed with breast cancer this year than will be diagnosed with NEC. But we also know the longterm prognosis for those diagnosed with breast cancer will–in most cases–be far better than the longterm prognosis for those diagnosed with NEC.

People tell me that part of the reason there is so little research done on this disease is that it is not cost-effective–that other, more frequent, forms of cancer provide more bang for the research buck–and more profits for the drug companies.

That provides little solace to the families of the thousands who die from this disease every year.

 

Why I am doing this–and a request

  • Dear friends,
    I watched my wife die last fall. I watched her world shrink from New England to Fall River to the yard to the house to a hospital room to a hospital bed. I watched her as she became so weak she could not get off the toilet unaided, as she lost control of her bowels, as she lost control of her mind.
    And all I could do was hold her hand and talk to her and be strong for her.
    In the end, it was all even her doctors could do. We simply had no real weapons to fight with.
    Jane died on December 10, 2010. The death certificate says she died of neuroendocrine cancer.
    But what really killed her was not NEC.
    What really killed her was our lack of knowledge about this little-known, frequently misdiagnosed, and chronically underfunded disease.
    Last year, the National Cancer Institute alone spent over $631 million on breast cancer, $300 million on prostate cancer, $281 million on lung cancer—nearly $5 billion in all. And those numbers do not include the millions spent by the American Cancer Society and other big cancer organizations.
    But those major groups did not spend much on neuroendocrine cancer.
    The best guess I have been able to come up with on what we spent on NEC research last year is less than $2.5 million, most of it raised by two small foundations dedicated to raising money for this one cancer.
    This summer, for the first time in 30 years, the FDA approved a new drug for NEC. That brings the total number of drugs to—three. None of those drugs offer a cure—they just relieve the symptoms somewhat—for a while.
    That needs to change.
    Jane said at one point that she wanted to be the first person to beat this disease. In the end, the only way for her to beat the cancer was to die and take it with her.
    I want this disease dead for everyone, and I don’t want them to have to die to do it.
    That’s why, on September 18, I will walk all 26 miles, 385 yards of the Boston Marathon route with the Caring for Carcinoid Foundation team for the Jimmy Fund. All the money I raise for that walk will go to support research on NEC.
    That’s why I am organizing two other projects for November 10, Neuroendocrine Tumor Awareness Day.
    It is why I started Walking with Jane.
    It is why I am asking for your support.
    Please, go to www.kintera.org/faf/donorReg/donorPledge.asp?ievent=449987&supId=331022955&msource=2011WALKFB and make a donation to support the Marathon Walk.
    Please, follow what is going on here or at facebook.com/walkingwithjane.
    Please volunteer your time and your talents.
    No one should ever have to go into this kind of battle so woefully under-armed.
    Thank you.
    Pax et lux,
    Harry

    www.kintera.org

    One in three people will face cancer in his or her lifetime, but no one has to face it alone. On Sept. 18, 2011, the participants of the Boston Marathon® Jimmy Fund Walk to benefit Dana-Farber Cancer Institute will change the odds for patients facing all forms of cancer.

     

An Introduction

Looks like we are beginning to get this under control. I had hoped by now to have everything up and running, but we are still a little behind. Shortly, we will have a real news post here beyond this status report.

At this point, everything should be up and running except for the Calendar and the store. My next job is too make sure that is true. Then I have a news item to post here. Then I will start to work on the Calendar. That will be spotty here at the start as I figure out how to garner everything that is going on in the NEC/NET/CS community and get it all located in one spot without making myself entirely insane. The store is going to be another day or two while I figure out how to make shipping charges work.

Everything you see here has been done by volunteers. Every penny we raise–above the cost of making the merchandise you may buy in the store–will go to researching this cancer and coming up with a cure. No board member will draw a salary or a wage. We are all doing this because Jane Dybowski mattered in our lives.

That said, I need to thank some people here publicly: Carissa Broadbent designed the site using the logo created by Bonnie Cohen from a photo I took in the 1990s. Carissa has worked endlessly and tirelessly to give this site the look and feel we wanted it to have. If you like the look of the site, the credit is all hers. If the site feels too word-filled and newspaper-like, that is all on me. Sorry. I like words. Bonnie Cohen’s work on the logo also deserves all the praise I can give it. I am blessed to have had these two talented young women volunteer their time to this project. If you have design work you need done in either field, talk to them. Pay them well. Their karma and talent have earned them that.

Mike Goeppner gets the credit for designing the backend of the site. I have learned that the behind the scenes stuff has an elegance all its own. If the site works as flawlessly as I expect it to, that is all because of Mike’s efforts to get everything here to play nicely together. The three of you need to make sure we add the design credits page some time soon and that it links to each of your business efforts. I owe all of you big time.

I could not handle much of the writing on this project. Some of the material was hard enough to talk about for me, let alone write about. To Meg (Allen) Flanagan, Emily Brinkmeyer, and Katie Dupere I also owe a great debt of gratitude, as I do to Chari Swist  for agreeing to edit some of what came in.

Dr. Jennifer Chan was Jane’s oncologist at Dana-Farber. She agreed to read all the medical copy we generated to make sure nothing got lost in the translation from med-speak to layman’s terms. Despite how busy she is she has not missed a deadline and her comments made the IBS vs. NEC piece much better than it was. She was our rock in the hospital. Her compassion and her friendship to both of us meant–and mean–more than I can say .

To Ellen Eisner in particular, but to all the folks at Caring for Carcinoid Foundation as well, my great thanks for your encouragement and your advice.

To Scott and Wendy Atkinson, to Morgan Bozarth, and to Arlyn Bottcher, my thanks and undying gratitude for helping me get through these last nine months. You have no idea what your friendship has meant to me. You helped take my dreams and begin to make them real. John Moniz and Gail Silvia also deserve more than a word here. I can’t tell you how much those Friday dinners have helped.

There are dozens of others. But I have much to finish here yet tonight–and your turns will come as your projects bear fruit.

Truly–all my friends–my debt to each and all is so great that all I have were not enough to repay you with in this life–save you accept my love and gratitude.

Pax et lux,

Harry