Good news on oncolytic virus front

I found a NET cancer video today everyone should watch. Dr. Kjell Oberg, who heads the oncology program at Uppsala University in Sweden presented a talk in November on the latest developments on the virus that eats NET cancer. The group has made substantial scientific progress since we first reported on it back in September.

iCancer continues to raise money for the potential trial.

They have made a number of changes to the virus to make it significantly safer than it was when first developed. The most recent animal model test shows the new form of the virus infects only NET cancer cells. A final series of tweaks to the exterior of the virus has created a form the group received a patent on.

Virus takes advantage of NET cancer features

The redesigned adenovirus attacks NET cancer in three different ways. The cells it infects are killed in the process of the virus replicating itself. The  virus also stimulates the immune response in the patient so that the body’s own t-cells begin to attack the tumor. Finally, the virus kills the cancer’s stem cells so that mutations are less likely.

…the worst side effects would likely be flu-like symptoms.

Unlike the Seneca Valley Virus (SVV) developed in the US, the Uppsala Virus was designed specifically to take on NET cancer. The SVV has been tried on NET cancer here and does seem to have efficacy  in humans, but that virus was designed for a different set of cancers that share some of NET cancer’s physical features. The Uppsala Virus should theoretically prove even more effective on NET cancer.

Seneca Valley Virus also holds NET cancer promise

The SVV has just completed a Phase I trial in the US that involved about 30 patients. It was well tolerated and a second trial for dose escalation is ongoing while preparations are made for a Phase II double-blind trial on small cell lung cancer.

…trial for dose escalation is ongoing…

Researchers seem encouraged by those results and think the virus has a future in treating a number of different cancers, including NET cancer.

Uppsala Virus still faces hurdles

The Uppsala Virus is still a long way from a Phase I trial because of financial issues. Oberg hinted things may be improving on that front, but said even once funding for the trial is in place it will still take about 18 months before the trial can start. The reason for that is the group will still have to set up to produce sufficient quantities of the virus in pure enough form to do the trials. That trial would also have to pass muster before the university’s ethics committee.

…the virus kills the cancer’s stem cells.

Oberg said the first trials of the Uppsala Virus would be on NET cancer in the prostate.

He said the worst side effects would likely be flu-like symptoms.

Fundraising for Uppsala trial extended

iCancer continues to raise money for the potential trial. As of this afternoon (January 16) the group had raised just over $152,000 of its $1 million goal. The effort has been extended through February 14. The group began raising money for the Uppsala virus early last fall.

…the virus that eats NET cancer.

The video is in two parts. The first covers the body of the talk and runs about 30 minutes. The second covers the Q&A period that followed the talk and runs just over 15 minutes. The presentation was not difficult for an educated layman to follow.

NET cancer and the footnote problem

My NET cancer journey began with Jane’s diagnosis in August of 2010. But it did not end with her death from the disease barely four months later. For 29 months I’ve spent at least part of every day learning about the disease or trying to raise awareness of–or money for–it. And since my retirement from teaching those three quests have occupied 12-16 hours a day every day.

…the most frustrating thing I have tried to do…

I am fully invested in making NET cancer more than a footnote in the history of cancer. Actually, bringing it to the level of a footnote would be a major step forward. We still have a majority of primary care physicians who have never heard of NET cancer or carcinoid syndrome. And even those who have heard of it are often slow to do what few tests we have to detect it because they are convinced it is so rare none of their patients could possibly have it.

How many NET cancer cases?

It does not help when even major cancer publications get the numbers wrong. I read a piece yesterday that claimed we only diagnose about 2400 cases of NET cancer a year. The actual number, according to the National Cancer Institute, is almost five times that. And that is how many cases we manage to accurately diagnose every year. But the average NET cancer patient has been diagnosed incorrectly three times before they get the news that what they have is actually NET cancer.

…about 12,000 will die as a result of it in the coming year.

And how many people have NET cancer–and die of it–and don’t know they have it? That is a number we cannot even begin to guess at. But we can certainly infer that the number is significantly higher than the average doctor thinks it is–and certainly higher than the number of deaths attributed to it each year.

What we don’t know can kill us

Look into the number of cases of deaths by right-side heart valve failure very deeply and you discover that many of those patients had symptoms associated with NET cancer for years before their heart problem was diagnosed. No one is going to dig those bodies up and test them for it, so we will never know for sure–but where there is smoke there is generally fire.

…a number of cases that would dwarf that of most other forms of cancer.

An autopsy study done in 2010–which has since vanished–found NET cancer in one nearly one percent of the bodies it looked at. If those numbers were accurate, we could be looking at a number of cases that would dwarf that of most other forms of cancer.

Best case vs. worst case

The truth is we have no idea how big–or small–NET cancer actually is. At a minimum, we know there are 120,000 diagnosed cases walking around today–of whom about 12,000 will die as a result of it in the coming year. That’s more people than died last year in drunk driving crashes. We know that about 12,000 new cases of NET cancer will be diagnosed this year. Some of those people will live for years with the disease. Others will die within months of their diagnosis.

…the average NET cancer patient has been diagnosed incorrectly three times…

The worst case scenario, however, is terrifying. Under it there are three million people in the US who have NET cancer and do not know it. If ten percent of them die each year–as is the case with those who have been diagnosed–that is 300,000 deaths–almost double the number of deaths from lung cancer in 2012–and nearly eight times the number of deaths from breast cancer.

My NET cancer frustration

Advocacy groups like Mothers Against Drunk Driving raised nearly $50 million last year to fight drunk driving. Groups raising money for NET cancer raised less than a tenth of that. The total amount spent on NET cancer does not even amount to a rounding error when we compare it to breast cancer spending–yet we know for certain breast cancer kills only about three times as many Americans as the NET cancers we know about.

I am fully invested…

Fighting NET cancer is the most frustrating thing I have

tried to do in my life–but it is also, potentially, the most important.

Past as Prelude

I really feel overwhelmed by the task of fighting NET cancer lately. I look at how far Walking with Jane has come in a little less than two years and I am enormously pleased. Then I look at how far we have to go–and I am terrified.

 …it means potentially saving a quarter of a million people…

Last year we generated just over $100,000 for cancer research–two-thirds of it for research into NET cancer. But to get there we tried every method we could think of: yard sales, dinners, walks, direct mail campaigns, t-shirts, buttons, jewelry–we even timed donations to take advantage of two-for-one matches whenever we could.

What $100,000 took

I went through three pairs of sneakers and likely walked and ran over 300 miles between training and actual walks and runs. And I wrote constantly, drafting posts for this blog, letters to potential donors and businesses I thought I might be able to entice into sponsorship deals, and notes to potential walkers and team members. And I read everything I could find about leveraging social media, as well as about NET cancer and cancer in general.

I don’t know anyone with deep pockets…

I updated this website as often as I could–which required more reading and more writing and more thinking. And when it seemed I was out of both energy and ideas, someone would come through the door with another way to try to get NET cancer on the map and well-funded–and I would kick in another slew of 16 hour days.

Making a NET cancer difference

People tell me all that effort has made a difference. They tell me they come out of meetings with me invigorated and recharged. They tell me the money we raised has leveraged other money I know nothing about that has led to more research and more hope for NET cancer patients.

$100,000 seems an insignificant amount.

But I look at that $100,000 and feel like the friend who just spent three days chopping up box tops to raise $89 for a rural school system. When we need tens of millions of dollars to make even a good start on finding a cure for NET cancer, that $100,000 seems an insignificant amount. It may be more than we had to start with, but I worry about the size of the effort it took to get us even that amount.

The NET cancer doubling cube

And we have pledged to double that amount in 2013, double that amount in 2014, double that amount in 2015, double that amount in 2016, and double that amount in 2017. In 2017 we hope to raise $3.2 million–roughly what was raised total by everyone in NET cancer foundations two years ago. In the seven years following Jane’s death the goal is to generate over $6.4 million.

I went through three pairs of sneakers…

When I look at those numbers, I get scared. I’m a retired school teacher from a rural school system who never made $70,000 in a single year. My former students are, for the most part, themselves, school teachers and newspaper reporters and nurses and other folks whose means are stretched to cover the needs of their families. I don’t know anyone with deep pockets–the kinds of people who write a $10,000 check as easily as they breathe. I have no business thinking about those kinds of numbers.

Saving NET cancer lives

But I do think about them. I think about them because the only way to unravel the mystery that is NET cancer is to find those kinds of resources–and to inspire others to find those kinds of resources as well. And if we can do that, then that $3.2 million figure inspires another $9 or $10 million raised by the other groups involved in this fight. We’ll be able to explore many avenues of NET cancer research instead of the one or two we can afford to pursue now–and that will mean the time to a NET cancer cure decreases from 25 or 30 years down to ten.

I am terrified.

More importantly, it means potentially saving a quarter of a million people in the US from the NET cancer death Jane endured. Afraid as I am of those big dollar amounts, those lives matter far more.

NET cancer and Nervous System cancers

I got an email last night from one of the reporters working on our NET cancer Press Kit. She is working on a story on NET cancer funding from the National institute of Health (NIH) and the National Cancer Institute (NCI).

…ignorance at a level I prefer not to think about…

The email explains the arcane method by which the NIH and NCI calculate what is spent on each type of cancer each year. They do not have a separate category for NET cancer or Carcinoid cancer. Rather, they lump it in with Nervous System Cancers.

The mystery of NET cancer spending

And even then, they maintain no clear list of what was spent on what for general consumption. The Nervous System Cancer amount is based on “summing up the pro-rated dollars on awarded projects determined to be relevant to that research area.”

To say this frustrates me is an understatement.

Nervous System Cancers include brain and spinal cancers, cancers that have little or nothing to do with NET cancers. And while most NET cancers occur in adulthood, many brain cancers happen to young children. To say there is a great deal of overlap between NET cancers and other Nervous System cancers would be an exaggeration.

NET cancer mindlessness

But, politically, it does allow the NIH to claim it spent big money on NET cancer related issues the last two years: $17.5 million in 2011 and nearly $20 million in 2012. That very little of that money was actually spent on NET cancer is of no consequence to them: they see it as the same as nervous system cancers. That there is no relationship between brain cancer or spinal cancer and NET cancer makes no difference–to the bureaucrats running NIH and NCI they are the same thing.

To say there is a great deal of overlap…would be an exaggeration.

To say this frustrates me is an understatement. I’ve spent nearly 2.5 years learning everything I can about NET cancer. I’ve read the books and the scientific papers. In order to understand some of it I have had to do a great deal of background reading on cancer in general. And I will admit my understanding of either subject is far from perfect.

Two entirely different cancers

But I have yet to see a single article anywhere linking brain and spinal cancer–or other nervous system cancers generally–to NET cancer. To say that funding for one is spending for the other strikes me as a display of ignorance at a level I prefer not to think about in those who make the funding decisions in Washington.

They do not have a separate category for NET cancer…

But the information I received last night makes me wonder who is in charge at NCI and NIH–and how they got that position. And it makes me wonder when the last time was anyone truly looked at what the classification system for cancer funding is.

And all of that makes me wonder not just about NET cancer funding from the federal government, but about cancer spending by that government in general.

My grief and NET cancer

NET cancer and my grief over my wife’s death are hideously intertwined in my life. That has rarely been more true than over the last 18 hours.

…save 33 families a day.

I dreamed of Jane last night. I dreamed about a road not taken–a road that led to an earlier death for her–one where we stayed local rather than making the trip to Dana-Farber that September morning. The death was just as awful–but it left me with no sense of purpose–just bitterness and despair.

Killing NET cancer gives me purpose

Not that I do not have days filled with those two emotions now. I do. But there is this sense of mission that helps to pull me clear of the worst those days could be. When I don’t want to get up in the morning–when I want to just lie in bed and do nothing–the voice in my head reminds me I have a cancer to kill and that I will come no closer to that goal if I do not get up and do something.

I cannot change anything about Jane’s death.

But today, even that tonic seems on the edge of failure.

Our NET cancer conversation

Jane asked me this morning why I am doing this. “It can’t be for me,” she said. “I am already dead. What you do will not bring me back.”

“I know that.”

“And I don’t need–or want–some grand monument.”

“I know that.”

I do not know the person staring back at me.

“So why?”

“Because I hurt. And because I don’t want anyone else to hurt. Not this way.”

“You can’t kill death. Even if you cure all the cancers there are, people will still die. And their spouses will still hurt.”

“But they won’t die the way you did.”

The worst of NET cancer

The worst thing about watching my wife die was not the final hours of her life–but the days and weeks that led up to that day.

I watched NET cancer steal her hopes.

I saw it all.

I watched NET cancer make her short-tempered and inpatient.

I watched her dignity die in sheets of gurgling diarrhea she could not control.

I saw it all.

NET cancer creates PTSD victims

And like a soldier who sees his best friend die in combat next to him and looks down to see his own body splattered with the brains and blood and suffering, who hears the final screams and can do nothing about them–it broke me.

‘But they won’t die the way you did.’

I look in the mirror now and I do not know the person staring back at me. He does not even look vaguely familiar. When I go for a walk it takes a conscious effort to keep the pace that was once as natural as breathing for both of us. If I let my focus go, I shuffle like an old man–barely raising my feet enough to clear the rough spots on the sidewalk.

NET cancer nightmares

At night, I don’t want to go to sleep. I find excuses to stay up until midnight and beyond–knowing that in sleep I will not often find rest. Rather, I dream those last weeks in the hospital over and over and over.

I don’t want anyone else to hurt. Not this way.

I cannot change anything about Jane’s death. I cannot change my experience of her death. I cannot change the experiences of the 33 spouses who lost their other half today to NET cancer–or the experiences of the 33 families who will lose a loved one to it tomorrow or the 33 the day after tomorrow.

NET cancer patients–and their families

But maybe, just maybe, the tiny amount we do today and tomorrow and the next day will make a difference five years from now. Maybe by then only 30 families a day will enter this dark land I now inhabit because of NET cancer. Maybe ten years from now only 15 people a day will die from NET cancer.

I dreamed of Jane last night.

Maybe 25 years from now, no one will.

The only thing I know is if we do nothing, nothing will change.

We have to kill NET cancer–not for Jane, not for me–but to save 33 families a day.

NET cancer and the fifth grade

My fifth grade teacher had a saying that is ingrained in my thinking: It is better to aim for the moon and clear the fence than to aim for the fence and crash into it. With NET cancer, that is a particularly apt phrase.

NET cancer kills.

We can bemoan the state of NET cancer funding and awareness–and the difficulty of changing either of those facts–or we can work to change the reality on the ground. From the beginning, that is what Walking with Jane has been about. I wrote my first piece on NET cancer and Irritable Bowel Syndrome less than a week after we buried Jane’s body. I wrote it because that inaccurate diagnosis 30 years before had stopped my wife from getting the treatment that might have saved her life.

Aiming high to kill NET cancer

I had little hope as I wrote that piece that anyone would read it. Two years later it is among the most viewed items on this website and is now available in pamphlet form. (Write us at walkingwithjane@gmail.com.)

…sometimes a zebra is really a horse wearing stripes.

In drafting our goals for this year I am fully aware of how high we are aiming. But for too many years the goals on NET cancer have been set on what we thought we could accomplish rather than on what we needed to accomplish. There are 120,000 people currently diagnosed with NET cancer who cannot afford to wait 25-30 years for a cure. They will be dead by then–and they will have suffered horribly getting there.

Killing NET cancer with money

Our first goal is financial. In keeping with my original goal of doubling spending on NET cancer every year for five years, next year Walking with Jane’s fundraising target is $150-200,000. The $150,000 figure is based on my original projection in 2011 of $37,500 for our first year, $75,000 in our second (2012) and $150,000 in our third. However, we have beaten the figures for the first two years–generating nearly $150,000 over that time; about $96,000 last year alone. Going with doubling every year for five years would give us a goal of $192,000 for 2013.

…a more substantial fundraising base for all of us working on NET cancer.

About a third of what we have raised the last two years has gone to general cancer research. My hope is that we will keep that ratio this year as well. We just never know where the next breakthrough will come from–and general cancer research is providing some important insights into NET cancer.

Expanding our NET cancer teams

In order to accomplish this goal we will need to increase the size and income of both our Walking with Jane Relay for Life team and our joint Caring for Carcinoid/Walking with Jane Jimmy Fund Marathon Walk team. But we will also need to increase the size and number of our fundraising projects. Last year we held a very successful pasta supper and an equally successful pair of yard sales, as well as a single mass mailing and corporate sponsorship program.

…we will revamp our current press kit…

But we need to expand into activities that will involve different audiences and different activities. We talked about setting up race teams last year, for example. We need to take some of the things we talked about a year ago and add them to the mix this year, while coming up with new ideas as well.

Killing NET cancer with knowledge

Raising awareness about NET cancer in both the medical community and the among the general public is our second goal this year. I have already written scripts for PSAs for television that are awaiting some action at CBS. But getting on a single network will not get us the largest possible audience. We will draft additional scripts for other television outlets, as well as for radio and the internet. And I will take whatever steps are necessary to get those scripts made and aired.

…increase the size and number of our fundraising projects.

In addition, we will revamp our current press kit from the current once a year splash to a once a month source for stories that can be used in newspapers and magazines across the country. We currently have in the works an FAQ by Dr. Jennifer Chan, a patient piece by Becky Martins–which will be posted within the next week–and a news piece on NET cancer funding at the Federal level by Meg Flanagan.

Expanding our NET cancer reach

We are also currently investigating a further expansion into social media–we already have a substantial presence on Facebook and Twitter, as well as a lesser presence on tumblr–and the possibility of a weekly Podcast.

Our first goal is financial.

Raising public awareness about NET cancer will not only save lives but may also help build a more substantial fundraising base for all of us working on NET cancer.

NET cancer for primary care doctors

Reaching the medical community will prove a more difficult task. Primary care doctors need to know more than the name of the disease and its symptoms.

I am fully aware of how high we are aiming.

To that end, we will continue to urge the Dana-Farber Cancer Institute to hold either a single conference for primary care physicians or a series of smaller presentations regionally over the next 12 months. We need to make more doctors aware that sometimes a zebra is really a horse wearing stripes.

NET cancer road for 2013

Meanwhile we will continue to upgrade this website and update it with the latest information on NET cancer available for doctors, patients and caregivers.

It is better to aim for the moon…

We will continue to need your help if we are to accomplish all of this in the year ahead. There are lots of ways you can contribute to our efforts to kill NET cancer–and most of them do not involve money.

NET cancer kills. We need to kill NET cancer.

Planning is in my genes

My approach to eradicating NET cancer relies on planning the same way every other aspect of my life does. Every December 31 every year I look back at the goals from the year before and check off the successes and the failures.

…failure is not an option.

The last two years have been hard. Jane’s death shattered so many of the plans we had that for a time after her death I struggled to see the point of any of it. But 21 days after her death I was such a creature of habit that I spent the plane ride back from Seattle looking at the year just ended and thinking about the year ahead.

Jane’s death shattered much

I have not been as successful at reaching my goals the last two years as I would like to have been. My personal life remains a shambles. I still find myself wandering aimlessly from room to room some days. There are both house and yard projects I have not yet been able to face.

I have begun the planning for the next phase of the journey.

Even my work on NET cancer has not been as successful as I would like. We’ve met some of the goals I set for Walking with Jane the last two years: We’ve generated close to $150,000 since Jane’s death; we’ve built this website and become a non-profit corporation; we’ve worked to build relationships with a range of cancer organizations and groups; and we’ve encouraged the people doing the science on NET cancer in a number of ways.

NET cancer quest: successes and failures

But we have failed to raise the profile of NET cancer in the general community to any significant degree. Nor have we pushed our fundraising much beyond the range of our friends and acquaintances. Indeed, too much of the money we have generated has come from timely donations that have helped leverage other money through matching grants.

I am pleased with the progress we have made thus far.

Still, overall, I am pleased with the progress we have made thus far. Beyond my hatred for the disease that killed my wife, I knew nothing about NET cancer or fundraising when I started this quest. And what I knew about media

and public relations had little bearing on the work killing NET cancer turned out to require.

Out of the NET cancer foothills

This year will require I take what I have learned over the last two years and apply it in new and unimagined ways. Until now, we have walked the foothills and approaches to the mountain that is the problem of NET cancer. And now, having seen the mountain in the distance, I know the most difficult part of the journey lies ahead of us.

We’ve met some of the goals…

I have begun the planning for the next phase of the journey. Some of it involves projects and partnerships already set in motion. But much of it involves thinking through a new batch of challenges I had not even conceived of when we started. For example, who knew how many different forms of social media existed or how important they have become to getting anything done.

Past, present and future intertwine

Planning requires constant thinking about the past, future and present. Ignoring any of those three aspects can lead to failure.

The last two years have been hard.

And where NET cancer is concerned, failure is not an option.

I worry

I have to admit I am worried about the year ahead for both Walking with Jane and NET cancer.

We have made big strides against NET cancer…

Walking with Jane has had a great 2012. Our goal was to generate $76,000 and we generated $96,000. We have scripts written and ready to go for PSAs on National TV. And people tell me we have made a difference in morale, both on the research and fundraising sides.

Big financial NET cancer goals

But next year, our goal is to raise at least $150,000–the goal we set for Year Three when we started in the Spring of 2011–and ideally I’d like to see us reach $200,000 in 2013 based on our success in 2013. To say that either of those numbers terrifies me is an understatement. It is, however, what we have to do if we are going to keep moving the NET cancer research ball forward.

…we are all going to need lots of help…

And we remain way short of the goal I set back in March to educate three million people about NET cancer this year. At best, we have reached 100,000 so far, and while I will give it until March before I close the books on that particular goal, getting there without a huge amount of outside help is just not going to happen.

Creating a NET cancer plan

Only a national PSA broadcast could give us that kind of reach–and the possibility for that at least exists. Next week I may try to put together a YouTube video.

…our goal is to raise at least $150,000…

Most of what we have done so far is provide seed money that researchers can use to leverage other money. We are still 3-5 years from being able to do much more than that by ourselves. We will continue to partner with other, often older, foundations to create more private giving. The longterm goal–adopted by at least some of those other foundations–is to double private funding for NET cancer and Carcinoid Syndrome every year for the next five years.

We need help to beat NET cancer

But we are all going to need lots of help to get there.

The truth is the fiscal cliff–regardless how that issue is finally resolved–is likely going to put a real crimp in government funding of NET cancer research–not that there is a whole lot there to begin with. But government spending does lend an air of legitimacy in the eyes of some funding groups.

NET cancer and the fiscal cliff

Further, suggestions that part of that bargain include elimination of the charitable giving deductions will very likely have an impact on private giving to organizations funding–and doing–NET cancer research. Charities, generally, will take a real hit if that deduction is eliminated.

…people tell me we have made a difference…

We have made big strides against NET cancer this year. And the potential is certainly there for even greater strides in the year ahead as we begin to get the results of the DNA study. But those strides will only come about–the results of that research will only fully be exploited–if we have the resources  that will help us do so.

Remembering Jane’s NET cancer

Fifteen days before Christmas in 2010, NET cancer took my wife from me–and from all oner friends and family.

…whatever change will come will come.

To say the two Christmases since have been difficult would be an understatement. This one will be little better. I woke up thinking of her this morning and what we would have been doing today and tomorrow. The thoughts leave a bitter taste that is not softened by time or circumstances–at least not yet.

Changes ahead–and behind

I took myself out for some Chinese food 10 days ago. My fortune cookie contained the usual scrap of paper. “The next month will bring the winds of great change in your life,” it said.

Today, I mourn my own loss. 

December of 2010 brought a typhoon of change–all of it negative. I have tried to make something positive out of it–and I think I have done that for others to the extent that was possible. But I am marooned in a time and place that is very hard to deal with some days–and none more so than this week of holidays when all the world seems filled with joy.

And miles to go…

I am not suicidal, just worn out and feeling the loss more deeply today than usual. And that makes me all the more determined to continue the fight against NET cancer–and every other form of cancer that takes people away from this life too soon.

It is too late to save Jane’s life…

We have made real progress this year in our fight against NET cancer. But there is still much more to do. And when I think about all the people I have met whose lives–and spouse’s lives–hang in the balance, it fills me with a sense of mission. It is too late to save Jane’s life, but not too late to save the lives of others.

Rekindling the NET cancer flame

But my heart is not much in that fight today. Today, I mourn my own loss. Tomorrow I think on the mystery of birth and rebirth, on the ongoing Festival of Sun Return, and all the other Yule celebrations that dot our religious faiths at this time of year.

But I am marooned…

And somewhere in the next week, I will rekindle my own fires from the dying fires of the old.

Change will come

The world is always full of change. Sometimes the changes are devastatingly bad. And sometimes they are devastatingly good. I could do with more of the latter this year–and fewer of the former.

 I woke up thinking of her this morning…

But whatever change will come will come.

To you and yours, may the holidays bring great and memorable joys. And may the New Year bring us a NET cancer cure.