Three NET frustrations

My NET work makes me crazy sometimes. Sometimes it makes me crazy because it means I am continually reminded that I am a widower and that my wife’s body is not just down the hall or waiting in the bedroom for me or down the road playing tennis with

her sister. Instead it lies in a coffin in the cemetery three miles to the north of where I sit writing these words–that, indeed, I would not be writing these words but for that.

Other times it is the faceless bureaucracy of the cancer establishment. Anyone who knows me knows I dislike it when the rules that govern a situation get in the way of what I am trying to do. I know the rules exist largely for good reasons–that they have evolved out of problems and headaches people would prefer not to see repeated. But sometimes I have an idea that exists outside those rules–and that creates issues all the way around.

Then there are the inanimate issues created by our love of computers and social networks. People design websites and those websites have to answer a multitude of purposes for a wide range of people. I don’t care how long a website has existed nor whom it was designed by, they all have glitches that leap up to bite one in the neck at the worst emotional moment.

Today I feel caught in the maw of all three. Days like this make me want to throw up my hands in despair and do what someone inferred I should do earlier this week.

The NET moment

People mean well. I really believe that. But until you have lost someone close to you, you do not know what that is like. And once you have you cannot, no matter how hard you try, explain it to someone else in a way that will show them the empty horror of it.

“Why are you doing all this?” someone asked. “It’s been two years. You should get over it and move on. Why do you care what happens to these other people with this cancer? It isn’t going to bring Jane back, you know.”

That last bit is true. I know she is never coming back through that door into my arms no matter what I do. I know she won’t come into my study and remind me I haven’t eaten or offer me something to drink. I won’t find her in the living room or under the deck reading or doing cross-stitch. I knew it the instant they told me there was nothing more they could do.

I don’t know what it is like to die. I only know what it is to be the one left behind. And try my hardest I have not yet figured out how to convey what that is to someone else. Part of me died in that hospital room when she stopped breathing. Another part died when I walked into the house for the first time later that night, knowing she was not there and would never be there again. The silence of it is indescribable. The emptiness of it is indescribable. The meanness of it is indescribable.

Fighting NET

I do all this because I’d really prefer others not go through my daily experience. I do it because I prefer others not watch their spouse slowly descend into the hell that is end-stage NET–especially not at 56 with retirement beckoning after a lifetime of making sacrifices for other people and other people’s children.

So I endure the memories and the bureaucracies and the balky computer programs. When I see a group of people getting together to canvas for a political candidate I ask them for a minute to tell them about NET. I write letters to businesses and people I hardly know to tell them about Jane and her death and to ask them for their help–even though it is the thing I like least in all the world to do.

I walk in the heat and the humidity. I blister my feet and build callouses and strength so I can walk in circles through the night or the length of the Marathon or whatever else needs to be done.

I know I can’t stop death. I just want to slow it down–to take one arrow from its quiver–the arrow called NET.

NET Virtues

NET patients need courage, strength, stamina, and enormous patience.

I have walked a number of friends and relatives to the end of their lives. Anyone facing a potentially fatal illness–and especially those fighting cancer–have little choice about being brave. They are in the fight of their lives. They often have to make difficult choices–often from a list of choices that are none of them good. they define “grace under pressure.”

Jane showed me that courage every day. She refused to stop teaching until the day came she realized she no longer could. And she still insisted on going in to clean out her room. She made the trips to Dana-Farber–and would have made them alone once she knew how

to get there if I had not told her I was going with her whether she liked it or not–that I was not letting her face this thing alone.

Absence of Doubt

It was only the day before we went to Boston for her heart operation that she said anything about the possibility she would not survive. Her doctors and nurses never saw a moment of doubt or hesitation the entire time she was there.

Strength and courage are often seen as the same thing. They are not. Despite her doubts about her recovery she began physical therapy in earnest and soon as they would let her. She pushed herself relentlessly in the knowledge that her exercises were the key to her moving out of the ICU and back home.

Stamina is often confused with strength–and sometimes with courage. Stamina is about endurance–about pushing on and moving forward. You can be brave, but without stamina all you can do is wish you could do what needs to be done.

NET requires Patience

For the NET patient in particular, though, patience is a necessary virtue. Honestly, we know so little that for many patients NET is about waiting: waiting for access to a trial, to a new drug, to a new procedure. Your body lets you do less and less. You can’t eat, you can’t sleep, you worry about where the bathroom is and if you will be able to get there before you poop in your pants. Right now, an NET patient lives in a world without hope. No item in the NET pipeline offers anything more than time–no item in the pipeline offers any hope of a cure. You live with the knowledge that the best you can do is slow the disease down–that the best you can do is buy a little more time before the symptoms overwhelm your life.

Jane was a champion when it came to patience. She endured every diminishment. She got angry sometimes–but as I told her more than once when she would ask why I did not yell back at her when she said something she thought was unforgivable, that anger was the disease talking and not her; it was the frustration with the limited options talking, not her. The entity that was Jane endured–and often worried, I think, more about me than she did about herself.

Caregiver’s Lament

I tried to return that favor. Whether I passed that test I leave to others to judge. I am not a fit judge. I see my own failings too clearly. Anything less than her full recovery counts in my mind as failure emotionally. I see the logic that I did what I could do–and that no road exists, even now, to bring that about–but this is a place that logic fails.

Five weeks from tonight I will be just outside Hopkinton. Five weeks from tomorrow I will walk the 26.2 mile course of the Boston Marathon. I will finish if I have to crawl across the finish line. I will be strong, I will exhibit stamina and patience in the hope that we will inspire researchers to continue to seek a cure–and so they will have a little more money to do it with.

I have seen the face of courage. I would spare as many NET patients as I can from having to exhibit it as Jane did.

The NET/ PRRT Trial

Patients with advanced NET that has reached the liver may have new hope on the horizon.

The ongoing PRRT (Peptide Receptor Radionuclide Therapy) trial in Texas that began in September 2010 had focussed one way of attacking NETs. But the group has now gained FDA approval to try intra-hepatic artery administration under an amendment granted by the FDA.

The first patient for this will be treated August 15–less than two weeks from now–in Houston, TX.

PRRT in a nutshell

PRRT is a radiation-based treatment for NET cancer that has been used in Europe for many years. It is now available in Australia, India, and Singapore. But the FDA has not yet approved the technique for use in the US. Many patients have gone to Europe from the US on their own dime–US insurance companies do not cover the procedure–to get the treatment. The Texas trial is the first of its kind in the US and is being conducted by Excel Diagnostics. Four other organizations–Baylor College of Medicine, St Luke’s Episcopal Hospital, and the RITA Foundation, all located in Houston and BioSynthema in St. Louis, Missouri–are also involved in the trial.

The study uses Lutetium-177 as its radiation source in combination with Octreotate, a somastatin analog.

The method is generally only used on NETs that have become resistant to other treatments.

More effective

The doctor running the trial, Ebrahim S. Delpassand, MD, said he expects this form of PRRT to be four to five times more effective than intravenous injections. He called the event, “an exciting milestone in the fight against neuroendocrine cancers.”

Two other radionuclides have been used in Europe. One proved relatively ineffective and has been largely discontinued. The other stays in the tissue longer and is more toxic to the kidneys and bone marrow.

Europeans have been working with RPPT for the last 17 years. Results have been good with few side effects.

US trails Europe

The US has been slow to adopt the procedure, however.

For US patients, the beginning of the PRRT trial in September of 2010 was the first hope the treatment would become broadly available in the US. FDA approval, however, is likely still several years away. That means for many with NET who cannot get into the trial that they will continue to have to go to Europe and pay for it out of their own pockets if they reach the point RPPT is their only option.

More information on the trial is available from project clinical coordinator Susan Cork. She can be reached at 713-341-3202 or by e-mail at scork@exceldiagnostics.com.

Marathon Walk Update

We are about $100 short of reaching $2500 for our Jimmy Fund Marathon Walk effort. I want to reach that level by midnight tonight. We raised nearly $1600 this week.  I hope to match that number next week, which would put us at just over $4000 with just under four weeks between us and the Walk.

All the money we raise will go to the Walking with Jane Dybowski Fund for Neuroendocrine Cancer at the Dana-Farber Cancer Institute, as will all the money raised by our joint Caring for Carcinoid Walking with Jane team.

Follow Us

Remember, you can now follow Walking with Jane on both Twitter and Facebook. Often we announce news about NET cancer there before it gets here.

NET is not, as many of you know, my only interest when it comes to cancer. I have called myself a cancer magnet more than once because I know so many people whose lives have been–and are being–affected by this foul disease.

Nor is cancer in general my only interest–though it seems that way both to some readers and to myself at times. One of those other interests collided with my interest in cancer today–and maybe not in a good way.

First the high

It began innocently enough with a post on Facebook from the Case Western Reserve School of Medicine. The press release was titled, “Researchers discover gene that permanently stops cancer cell proliferation” and told the story of a mutated gene that shuts down the growth of

cancer cells in vitro. If the mutated gene could be introduced to human cancer cells in the body, the thinking is we would have a non-radiation, non-chemo means of stopping a tumor from growing. There would be none of the side effects cytotoxic methods induce.

Further, it might even prove the long-sought-after-perhaps-mythical magic bullet that would end cancer as a serious health problem.

Because the piece is a press release there was not a lot of evidence presented.There have been no Phase I trials–just a series of experiments done in a lab in a petri dish. But the news was not something I wanted to sit on, so I posted it to our Walking with Jane Facebook page and to the local Relay for Life site.

Then the low

Then I got a note from a friend–a 4.5 year survivor of cancer with an obvious reason for interest in the subject. She had reposted the piece and received a response from another friend referring us to a review paper on drugs that shut down the Chk1 pathway the mutation turns on. The results there throw the entire thing into doubt.

There is, however, a difference between what the researchers were looking at in the review paper and what the mutation researchers at Case have discovered. The earlier researchers were trying to block the Chk1 pathway because it is involved in repairing damaged DNA. The mutation, however, activates that pathway, which somehow seems to stop the cancer–even though logic says it should not.

The review paper had me convinced this was not something that would not work. Then, when I looked at the press release again, I was not so sure. But I have also been a reporter and been interviewed by reporters, so I know that what we say and what a reporter hears are not always the same thing.

And then further confusion

I have now read the abstract of the paper from the Case researchers–unfortunately the full text is only available to subscribers or those with $35 to spend for a single day’s access–and am still baffled by how this works. They do say that how Chk1 works is “not well understood.”

I’d really like to see full text of the paper. I’d like to know what they did, how they did it, and what precisely happened. I especially want to know why activating something we thought we wanted to shut down kills the cancer cells.

You can now follow us on Twitter

As of this morning, Walking with Jane is on Twitter. If you want to follow us for the latest in NET news–at least from what we get to see–follow us on Twitter

NET surgeons have new ally

NET surgery has a new ally. Part of my research yesterday involved watching a video of a newly developed surgical technique to remove neuroendocrine tumors using robotic arms. The technique does not require the major incisions standard surgery does. That means faster recovery times and less chance of complications. Less physical stress on the patient means we can open some other doors we have not been able to open safely to this point.

While the sound quality is not great in places, the video is fascinating to watch. It opens with an unrelated operation on the thymus, but even that is amazing to watch. I highly recommend you take a look at it.

Of course as I was watching it I had an attack of “If only…” syndrome.

NET/CFCF-WWJ Marathon Walk update

As I write this, our Caring for Carcinoid Walking with Jane team totals for the Marathon Walk include 11 team members recruited and $4,592.20 raised. That is less than 20 percent of the posted team goal–and less than 10 percent of the amount we would really like to reach.

The posted goal is for 25 members by game day–September 9–but I would really like to get that number to 50. Twelve people have told me they plan to walk with us, but have not yet registered.

Team Leaders

I currently lead he team in funds raised following this weekend’s mass e-mailing. On the board, I have $1,926.40. I hope to reach $2500 by the end of the week. My goal on the Walk website is $5000 but I would really like to get close to $10,000.

Elizabeth McNeil has been at the top of the CFCF-WWJ leader board for several weeks. We signed up at pretty much the same time. She has $1595.80 right now, which is good for second. She has eclipsed her original goal of $1500. Both her father and her brother were diagnosed with NET. Her father died of the disease in April, just 11 months after his diagnosis. Dr. Chan, Jane’s doctor, was her father’s oncologist.

Running third, at $350, is Jenaleigh Landers. Her goal is $1000.

Elizabeth’s total puts her in about 70th place overall and seventh among first time walkers. My total puts me about 54th. The first place individual overall is at $27,212. It currently takes just over $8000 to crack the top five and over $6500 to make the top ten.

NET Team Rankings–and more

Our team total puts us in the top 50 teams overall to this point. The other team we know about that is raising money for NET is Kulke’s Krewe, which is routinely in the top teams in terms of money raised. As of Friday, they were in 13th with $11,756.60.They raised a total of about $95,000 last year–and want to beat that number this year.

The top team overall has raised over $28,000 to this point. The top three are all over $20,000.

Bottom Line

I think I may be the only holdover on our team from last year’s group. In many respects we are a new team with a partially old name. We are going to need lots of help. I hope you will find a way to join us in the fight against NET–either on the course or through a donation.

Reviewing articles and videos on NET for inclusion on our Resources pages is frequently a mind-numbing task. So much is written in Medicalese or covers ground others have done better. Even the easier patient stories are emotionally wrenching.

But sometimes, like today, those medical pieces–flaws and all–open new windows of understanding.

NET and me

Those of you who have followed this blog regularly know that I am not content to recite fact after fact. You know I am as emotionally involved with these disease as it is possible for a non-patient to be.  And you know I do not turn my brain off when I am looking at evidence. Some months back I read about prostate tumors and the search to understand why some are aggressive and some are not. According to an article in Harvard Men’s Health last fall, NETs in close proximity to prostate tumors seem to be implicated in the level of aggressiveness in prostate tumors.

That led me to speculate about the possibility of NET being a player in other aggressive cancers. I learned in June that we really had no scientific answer to that question. The research has, not surprisingly given our limited resources, not been done. (Marathon Walk Donations for NET Research)

Whether researchers have begun to do that research at this point I cannot say. I see the results of research, not the proposals the people in the labs write about what they want funding to look at. It is not until after results are published that I get anything near a look. Even then, sometimes all I can get access to is an abstract.

Warm NET gun

So I am really delighted when I get to read a whole paper–even if it means slogging through things that are not artfully written. And if I have to keep a dictionary to hand, at least I am learning a new collection of words.

Such was the case today. Cancers has dedicated its entire July issue to NET cancer. And the journal made available today the full text of a review article on NETs and lung cancer. So I curled up with the pdf and started to read.

And there it was: a warm, if not smoking, gun. It turns out that ALL invasive lung cancers are made up of a mixture of cancer cells–and that 20-25 percent of those cells are always NETs. Lung cancers are, unless purely made up of NETs, extremely aggressive. Now I have two cancers growing in close proximity to NETs–and both are aggressive. One I can see as coincidental. But a second truly raises my eyebrows. Find me a third and…

NET research plea

It will be chillingly ironic if it turns out this indolent little cancer we stopped doing research on for 40 years because so few people had it holds the key to all those really aggressive cancers that frighten the daylights out of us.

My pattern-seeking brain thinks there is something going on here. Please, someone, do the research on this I lack the credentials and skills to do.

I wish I could see NET as an interesting puzzle–as a game I could walk away from whenever I want to. Then it would not bother me that people will die from the disease this year and next year and the year after and the year after into the distant future. Then I could be satisfied with the pace of research and our slow grind toward making the disease “manageable” while we wait patiently for a cure.

The NET patients I have met seem a patient lot on the surface. They don’t seem to be overly bothered with experimenting on themselves as they try to find the right dose of black raspberry powder to control their diarrhea. They stoically endure the self-administered injections of octreotide. They don’t whimper or whine when they see what gets spent on other cancers compared with theirs. They know they have a cancer with no cure and no near-term hope of one.

The disease is indolent, they are told. The slow rate of growth means they have life ahead of them, albeit a gradually declining quality of life that will gradually shrink the world around them into the size of a coffin.

NET patience is an illusion

But each of them wants much more than that. I remember listening to one woman this spring talk about the “relief” of being diagnosed with breast cancer after years of fighting NET. Here, at last, was a cancer with a clear path to treatment and a potential cure. Imagine a cancer that makes you glad to learn you have a different form of cancer.

NET cancer hobbles along on its few million dollars a year and the handful of missionary doctors who are intrigued enough by the disease to actually spend their careers doing research on it. Find a cure for breast cancer and you will have a shot at a Nobel Prize. Find a cure for NET and maybe your own mother will take notice.

And yet…

Watch someone die from NET and it will change your life. Watch someone you love die from the disease and every plan you have for the future will shatter.

NET ignorance creates no bliss

And the more you learn about the disease and its history the more hurt and angry you will become. I had seen deaths before Jane’s–some of them truly awful. I remember the first brush with lung cancer. I remember the deep gouges in the oak arms of his chair that were more eloquent than any scream in describing the pain he endured. I remember the days in my mother-in-law’s hospital room as she fought to make her crystalized lungs absorb oxygen until exhaustion finally gave her some measure of peace.

Those diseases had substantive research programs going on. Billions were being spent on both diseases. You could drown in the amount of knowledge we had at the time on either.

NET resources slim

On NET, even two years after Jane’s death, we do not spend even $5 million a year. We still have no reliable way to diagnose the disease. We remain uncertain about how common the disease is. There is so much we do not know that we need to know. But progress toward getting that knowledge–even where we know how to get it–is hamstrung by the small numbers working on it and the miniscule amount of money we have to work with.

I am not patient. I have lost too much already. I want to see the day that others do not lose as I have lost.

So I will write the letters, plan the fundraisers and walk the Marathon Walks. For me, this can never be a game.

NETs.

That is largely how I have spent the last three days. Friday, I pushed 225 pieces of mail out the door. Saturday, I walked 14.5 miles in the morning to train for the too-rapidly approaching Marathon Walk, then put out another 300 pieces of mail before I went to bed. This morning I put in five miles and sent another 250 pieces of mail.

But with that effort I have only the electronic mailings done. I still have about 500 envelopes to address and stuff next week for people for whom I have only physical addresses. I also have my training to continue, a poster to design, and a potential benefit concert to piece together for October–not to mention our annual post-Relay get together. Or the daily research. Or the daily writing of this blog.

If that all sounds a bit overwhelming, it is.

NETs Too small

The problem is there are too few people working full-time on raising money for NET. I am not sure there are a dozen people in the country really working this end of the thing. There is a reason funding for NET lags behind many other cancers. This weekend is the Komen three-day, 60 mile trek in the Boston area. Besides the people marching and the volunteers, that play is backed by a significant-size professional backbone. They will raise millions.

Next week is the Pan Mass Challenge. That bike run from the western Massachusetts border to Provincetown on the tip of Cape Cod has a goal this year of $36 million. Caring for Carcinoid, our Walk partner, has a team in that event that will likely raise over $100,000 for NET research at Dana-Farber. Our combined Caring for Carcinoid Walking with Jane team has a goal for the Marathon Walk of $25,000. Last year Caring for Carcinoid’s team raised just over $35,000 in the Marathon Walk. The Walk, as a whole, raised over $7 million, all of which went to research into various cancers.

Piggyback NET

Even if we could get every group working on NET cancer and carcinoid tumor funding into the same geographic area to work on a single fundraiser the size of the Marathon Walk or the Komen 3-Day, we simply would not have enough people to pull it off. Instead, we piggyback on other, larger fundraisers run by other groups who have the resources to pull off something big. This generates what, for us, is significant money. There are two groups doing the Marathon Walk with NET as their focus: Kulke’s Krewe and our combination CFCF/WWJ team. Between us, if they reach their goal and we reach the goal I have privately set in my mind for our group, we may raise close to $150,000 this year.

That would be great. But it still will be a long way from the amount of money we really need to raise if we are going to kill this disease before I am too old to walk.

I have no easy solution to the funding problem. All I can do is send out emails and letters and hope we eventually get to the point we can hold our own big events that people will actually take part in.

The work on Walking with Jane and NETs the last 19 months has given me an entirely new appreciation for the work of the people who founded the American Cancer Society, the Jimmy Fund and other, similar, organizations. Walking a mile in another’s moccasins’ has become a cliche, but that has not changed the truth of the statement.

I have walked much further than a mile in these shoes–and I expect there are many more miles ahead of me before I have all this troublesomeness figured out. This much I can tell you: those folks were giants. They figured out most of what had to be done with little or no coaching from the sidelines. They were in largely uncharted territory.

Even with the help of the people at Dana-Farber, the Caring for Carcinoid Foundation, and our local American Cancer Society Relay for Life group, putting together what we have done so far has not been easy. I have a difficult time imagining what it must have been like to try to do something similar when no one had tried it before–knowing that lives depended on whether you succeeded or not.

But I do know now the thrill of opening the Post Office Box and finding that first real check in it. And I know how even a small amount can sweep away weeks of frustration. Unfortunately, I also know what it feels like to open that box and see nothing but empty space. A donation means I have managed to reach someone–as does an email announcing that someone has made a donation to ACS or the Jimmy Fund to support our team or an above average day on this website. A day when that box is empty, the email holds no news, and we score less than a handful of views on walkingwithjane.org feels like we have reached no one and done no good that day.

This is not true, of course. Every day we craft another piece of the puzzle. Today I created a new piece of letterhead, drafted a standard thank you note for donations, finished the t-shirt sponsorship letter, spent the evening at our Relay planning committee break-up meeting talking about this year and next year, created a Facebook teaser and drafted and edited this piece. Each one of those things lays the groundwork for the next series of projects I hope will create the foundation that will make Walking with Jane a real force in the fight against NET.

We are not there yet–and I know I need to be patient. But I have met too many NET patients. I know too well what their future looks like if things remain as they are.

So I will do the Marathon Walk and the Relay. I will write the letters and articles and do the interviews and give the speeches.

My frustration may boil over now and again, but I have promises to keep. Someday I may even get used to these moccasins.

Sometimes the battle against NET frustrates me so badly I want to quit.

Today is one of those days. It is the result of a week of grinding on things and feeling that for all I have read and thought about and written I am doing far too little good for the time spent.

Two days ago I wrote a post on NET research. Two people have read it. Yesterday, I wrote about the need to fund basic research. Three people read that–and no one reacted to it.

Ten days ago, the local paper ran a story on my Jimmy Fund Marathon Walk effort. There was a bump in visits to this site–and one person commented on the story on the newspaper’s site, but that was the total reaction to the piece.

Jane’s death was 19 months and 15 days ago. Every day it feels like another part of my soul is gone–eaten by the grief and my seeming inability to bring about any kind of real change. People are still diagnosed with NET as poorly as they were two years ago. We still have no way to cure the disease after its initial stage–nor anything on the drawing board that looks likely to do that.

The NET money puzzle is every bit as inadequate as it was two years ago–and while we have added a few dollars to the pie, it is still woefully inadequate–and my efforts have had very little–if anything–to do with any of it.

I have ideas, but not the resources to carry them out as I would like to. We  have an electronic storefront that few visit–and that no one has purchased anything from for months. I have a direct mail letter finished but find the idea of stuffing and addressing 500 envelopes overwhelming. The same goes for a letter looking for companies to sponsor the Marathon Walk t-shirt.

My to-do list grows every day but the results list is largely stagnant.

This is not, however, the sound of me giving up. I played hooky most of today in the hope a day away from the madness would improve my state of mind. It has, but I am still feeling pretty frustrated. Hopefully, another good night of sleep tonight will help.

But I begin to understand the frustration others who have been fighting this disease longer than I have feel. Gaining any kind of traction when most of the world has never heard of NET or CS seems nearly impossible.

Still, I am reminded of the motto of the Skunkworks–the lab that designed US planes for World War II: “The difficult we do immediately; the impossible takes a little longer. And I am also reminded of President Kennedy’s statement about going to the moon: We do not do this because it is easy but because it is difficult.

So I will go back to work tomorrow. I’ll stuff envelopes and make lists and draft new appeals. I’ll keep trying. Doing nothing changes nothing. Change only happens when we work to bring it about.