Posts Tagged With: Cancer

Back to the Real World

In my work at Fred Hutch I collect and manage data on cancer patients.  Every day when I come to work, I have to temporarily suspend my empathy for the patients we study and disconnect my emotions or I’d lose my objectivity and quite possibly my mind and never get any work done. The people and their experiences we study become data points living in a database within a virtual world stored inside the computer network. They become statistics that we manipulate and report on to further science. This is a necessary requirement of doing research and getting the work done. Thus, most of the time when I work at Fred Hutch, I live in the abstract world.

Every so often, though, the reality of cancer thrusts me back into the real world like a cold slap across the face. Yesterday, for example, I learned that a friend in her forties who had been battling cancer for a number of years finally succumbed to the disease and died. Aletia wasn’t a close friend but she was someone I knew through our church and the school that my children attended.  A real person cut down in her prime by cancer, leaving behind two lovely girls and a loving husband.

Aletia’s death is also a reminder why working in cancer research is so important. Real people get cancer, real people suffer from it, and real people die. Lots and lots of people. From babies to 100-year olds and everyone in between. This is the reality of cancer and the reality of life. RIP, Aletia.

I’m riding Obliteride on August 9th to raise money for cancer research at Fred Hutch. Please consider donating to the cause.

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A Day in the Life of a Cancer Programmer

Fred Hutchinson Cancer Research CenterI consider myself very lucky to have the privilege to work at Fred Hutchinson Cancer Research Center, which we affectionately call Fred Hutch. I manage a small team of programmers in creating custom solutions to support the world-renowned research that is happening here.

In this post, I thought I’d give you an idea of what research projects I am personally involved with day to day, either in a programming/configuration/orchestration/maintenance role or in a management role.

Oh, and it’s worth mentioning that not all of the work we do at Fred Hutch is cancer related. Fred Hutch scientists also do research in infectious diseases, diseases of the immune system, and a few other disorders. Still, the bulk of the science being done here is cancer related.

So here are some of the projects I am currently working on…

1. My group at Fred Hutch serves as the clinical coordination and data management center for a multi-site study of an immune system disorder called Sjogren’s Syndrome. The goal of this study is to develop a panel of biomarkers to diagnose this disorder. We are responsible for the collection, quality control, and storage of clinical and laboratory data for this clinical trial. For this project, we use a electronic data capture system called REDCap, a laboratory system named LabKey, SAS, a few custom-built .NET programs to tie it all together, and SQL Server.

Image_782. I lead the programming team supporting a pair of trials looking at the accuracy of pathologists when diagnosing breast cancer and melanoma. Initial results of the breast cancer study made news when a controversial paper describing the results was recently published in JAMA. The system is built using ASP.NET MVC with an electronic slide viewer built using Silverlight.

vials-rack-192652743. I created and maintain a specimen repository that I first wrote using ASP.NET about 10 years ago. This system is used to track specimens– little vials of blood and tissue that are collected from study subjects and stored in super-cold freezers–for five different repositories, including repositories for leukemia and a rare disease known as Shwackman-Diamond syndrome.

4. My team maintains another ASP.NET-based system that tracks the logistics of running hundreds of clinical trials in AIDS treatment and prevention. This system also communicates to our funding agency at the National Institutes of Health on a daily basis using a web service client.

5. My team recently launched a new study that is looking at the effects of eating frequency on health. We helped build the data collection system (using REDCap) and a .NET console program that texts participants reminders to complete their daily food intake diaries.

6. We are working to build a website for a new study with pilot funding to improve the reliability of self testing for Cytomegalovirus (CMV) infections in bone marrow transplant recipients. CMV is particularly dangerous in these patients.

Cholera7. I am helping to manage the data collection of a study that is attempting to extract information about cholera outbreaks in Africa using as the source data reports extracted from a public reporting system called ProMED. The goal of the study is to build models to better understand how this devastating disease spreads.

8. We manage the data collection for innovative research study to use acceptance and commitment therapy (ACT) to coach smokers over the telephone to quit smoking. Prior studies have shown ACT to be a promising technique to help smokers and others with addictions to stop these destructive behaviors.

9. I recently completed an online implementation of a scoring algorithm for use by oncologists who are trying to predict patient survival from hematopoietic stem cell transplants for leukemia and myeloma. The system was built using ASP.NET MVC and jQuery.

10. I lead a team that maintains a 8-year old custom-developed CATI (computer assisted telephone interviewing) program for our telephone interviewer team.

That covers most of the systems that occupy my time of late.The technology is not always bleeding edge but, in general, we try to stay current and forward thinking.

It’s a challenging job at times, especially when trying to juggle dozens of clients who are almost always on a short schedule with a even shorter budget. But boy, is it rewarding. I truly love my job and I hope you enjoyed reading a bit about it.

Obliteride_Logo_Horizontal_4CP_Regv2And finally (you knew there was a tie in), my wife Suzanna and I are riding our bikes 50 miles on August 9th to raise money for the wonderful and truly life-saving research being done at Fred Hutch. Won’t you please consider supporting the amazing work we are doing here by donating to my ride? Thank you.

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Cancer Gets Personal

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Suzanna

As many of you know, I work at Fred Hutchinson Cancer Research Center (or simply Fred Hutch). It’s a very rewarding job knowing that I am helping scientists crack the code of cancer and save lives. But to be honest, when working in cancer research, it’s very easy to keep the suffering from cancer at a very distant, clinical, and safe distance from oneself. Hey, it’s just a job! (In reality, it’s not just a job, but I’ll save that for another post.)  But I have a more personal relationship with this thing called cancer.

Over twenty years ago my sister, Pat, had a close call with melanoma.

My dad had a pre-cancerous but serious disease of his throat called Barrett’s Esophagus. It got so serious for my dad that they had to surgically remove part of his esophagus in a quite painful surgery. (Fred Hutch is a world leader in Barrett’s Esophagus research, by the way.)

My cousin, Paul Kunzinger, who was born within a year of me, died of lung cancer in 2007 at the age of 49 leaving behind his wife and two lovely girls. (If you are interested, I wrote about Paul in a blog post back in 2009 while I was raising money for a different cancer ride.) Needless to say, his death was devastating to his family.

Cancer really hit home, however, when my wife, Suzanna, had a major scare when her only kidney (transplanted from her dad almost 20 years ago) was found to have a cancerous tumor on it a few months after we were engaged in 2010. It was very likely that she might lose her kidney in the battle and then what? I was certainly ready to give her one of mine but we didn’t know if I would be a good match. Fortunately, her kidney surgery was a resounding success and she was able to keep her kidney. She gets a scan every year to make sure it hasn’t come back. (Suzanna, who is also riding Obliteride this year, has written about her cancer battle in a series of posts on her blog.)

Suzanna and I are so so lucky that it worked out so well because, to be frank, we feared the worst. I’m sure we felt like many people who get the diagnosis of cancer. That’s why research needs to continue at world-class cancer research centers like Fred Hutch. And this is why Suzanna and I are riding Obliteride to raise money for Fred Hutch. I hope you can help.

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My Obliteride

Me (in the middle) at the StartTwo weeks ago on Saturday, I got up at 5:30 am after a night of not-so-restful sleep. (We had thunder and lightning much of the night and I was a little anxious about the ride.) Unfortunately for Suzanna, she had to wake up two hours earlier since she was on the first volunteer Saturday shift for the event.

Even though I woke up at 5:30 and the ride didn’t start until a little before 8:00, I managed to fritter the time away so that when I finally left I had to Suzanna at the Friday Night Pre-Partyride like a mad-man to the start. And instead of taking the longer, flatter route, I rode the 5+ miles straight over the NE 65th Street hill to the start at Magnuson Park.

When I arrived, Suzanna was there at the start in her orange volunteer shirt. There were four different routes and we were each release in waves. First, the 180 mile riders, then the 100, then my group, the 50 mile riders, and after we were gone, the 25 milers.

 

The Route

With all due respect to the event organizers – they did a fantastic job in so many ways – whoever designed the routes must be a sadist. Check out the elevation chart: one huge hill after the next.

Hills, Hills, and more Hills

Now I understand that Seattle is hilly but I’ve lived and run and ridden all over this area during the past 30 years.That said, there are ways to avoid the hills and not to pound hills them into the participants of a ride.

Nice Caribbean Band at a Rest StopOh, and while I am mentioning it, one other issue was the bad signage. The course signage consisted of the occasional “Course” sign on a telephone pole and four different colored arrows on the pavement: one color for 25, another for 50 (blue), and two other colors for the 100 and 180 mile routes.

Suffice it to say, it was really easy to miss the arrows. I know that I and a number of other 50-milers managed to miss at least one turn and ended Relaxing after the ridethe race with only 41 miles on the bike odometer (and we really wanted to ride 50). I spoke with a number of other people riding various routes and many rode either too many miles or too few because of missed or extra turns in the route.

On the other hand, this is only the first year for the event; I’m sure they have heard their fair share of complaints about the hills and signage issues, and likely make things better next year.

 

The Money Raised for Cancer Research

raisedDespite the hilly course and the other minor issues, It was an amazing event. After all, the point of the whole thing was to raise money for cancer research and thanks to my sponsors, we managed to raise over $3,100 (not including the matching corporate donations that should be coming in Getting a massage after the ridesoon).

All totaled, the event has raised 1.5 million dollars for the live-saving research that happens at the place where I work: Fred Hutchinson Cancer Research Center. So far, that is. Money will continue to come in from late donations, matching donations, and riders who hadn’t met their minimum donation amount by race day (they have until October 1).

Aside: The Seattle Times wrote a nice article on the race. I’m even depicted in the starting line crowd in the second of two photos. For some reason, I wasn’t smiling at the moment the shutter went off. But I was happy inside!

I am so happy I got to be part of the first Obliteride; I plan to ride it again next year. In fact, Suzanna and I area talking about riding it together next year. And we likely will up the mileage and tackle one of the longer routes. But we have a little time to work out the details.

Thanks again everyone for your support!

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Better Care Starts with a Better Diagnosis

30cancer2-tmagArticleYou may have read the recent article about the National Cancer Institute coming up with more precise language when talking about cancer. Sounds silly perhaps, but this is so important when dealing with this scary disease and the language that physicians use can subtly change the care given to patients as well as their comfort level.

At Fred Hutchinson Cancer Research Institute where I work, I have been involved in two studies of cancer diagnosis, more specifically in how pathologists read pathology biopsies for Melanoma (skin cancer) and Breast Cancer.

These ground-breaking studies, led by Dr. Joann Elmore at the University of Washington, are taking a hard look at how well pathologists do in diagnosing cancer, and how diagnostic procedures can be improved. My group has provided the programming support for these studies, including the development of a web-based slide viewer, data collection forms, and the infrastructure to support the projects.

Donations made to my Obliteride campaign support studies like these as well as many other life-saving scientific research studies in diagnosis, prevention, and treatment at Fred Hutchinson Cancer Research Center.


I’m riding in Obliteride on August 10th to help raise money for the life-saving research at Fred Hutchinson Cancer Research Center, where I work. Please consider donating to my ride to end cancer.

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Keeping Track of Leukemia Specimens

Over seven years ago, I was asked to create a system to help scientists keep track of specimens at Fred Hutchinson Cancer Research Center where I work. The system I created, the AML Specimen Bank, is still used today by researchers studying an often fatal type of leukemia in children called acute myeloid leukemia or AML.

amlBack seven years ago, Dr Soheil Meshinchi, a pediatric oncologist at Fred Hutchinson Cancer Research Center and Seattle Children’s Hospital, came to me asking for help in replacing an aging system they were using to keep track of the specimens they collected for the AML registry they maintained. The original system, a desktop program written in Visual Basic on top of Microsoft Access, had a number of problems. After evaluating the system, I decided to rewrite it in ASP.NET Web Forms, C#, and SQL Server.

amldbThe system lets scientists collect information about the patient who supplied the sample, about the type of specimen collected (blood, tissue, etc.), and where the samples are stored (freezer name, stack, level, and location within the box). AML researchers use the system to store samples, maintain related data, manage the freezers that store the samples, and locate and check out samples for use in their research.

It’s nice to know that seven years later, Dr Meshinchi and his colleagues are still using the system to keep track of the AML sample repository. In fact, the system we first created seven years ago works so well that it has been Cancer-of-the-Bloodcloned and reworked for four other sample repositories for other types of cancers. We are currently in the process of creating a brand new edition of the system for a more comprehensive leukemia repository that we are building using .NET 4.5 and ASP.NET MVC.

I am very lucky to have found a job that blends my programming aptitude with my love of science, research, and improving the lives of others.


I’m riding in Obliteride to help raise money for the life-saving research at Fred Hutchinson Cancer Research Center, where I work. Please consider donating to my ride to end cancer.

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Fred and William Hutchinson

As you may have read, I am riding in a cycling event, Obliteride, that is a fund-raised for the cancer institute where I also work and have worked for the past 9+ years, Fred Hutchinson Cancer Research Center.

What, you ask? Why is the place you work named Fred Hutchinson and what does that have to do with cancer? Many years ago, I wondered that same thing.

Well, it turns out that Fred Hutchinson was a person—a moderately famous major league baseball player and manager who grew up and went to college in Seattle. And it turns out he died of lung cancer in 1964.

Just as important, Fred had a brother named William who was a surgeon and who decided to found a cancer research center in honor of his brother, Fred, in 1975. This was the birth of Fred Hutchinson Cancer Research Center, which has done many great things in the effort to eliminate cancer and reduce suffering from it.

I am riding Obliteride and raising money because I believe so strongly in the place where I work and the good we are doing.

Recently, I ran across this great video about the Hutchinson brothers.

 

Please consider donating to my Obliteride campaign to end cancer by clicking below. Thank you!

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Cancer Gets Personal

Cancer definitionIt seems like not too long ago when I didn’t know anyone with cancer and then it seemed to hit, like summer here in Seattle…One day it’s 50 degrees and raining, and the next, boom, it’s hot and sticky summer weather. All of a sudden all around us, just like, for me, cancer.

In 2011 though it was my turn. First, some background: After a birth defect necessitated a kidney transplant; my father donated a life-saving kidney to me in 1995, I have been blessed with pretty-darned good health. So much so that I was training for the RSVP (Ride from Seattle to Vancouver and Party) bike ride with Paul (we did STP (Seattle to Portland) the previous year) when, after a 100 mile training ride I didn’t feel well.

Of course, you might think that after 100 miles on a bike, most people would feel crummy; but it wasn’t just being tired and sore. That night I couldn’t get warm and watched as my temperature started to climb, up to 101, then 102, an finally 103. Now, as a transplant recipient you can think of two causes of a high fever; infection or rejection. So a trip to the ER was an absolute necessity. Here we were back from a trip to Europe, where Paul had just proposed to me, and now it’s off to the emergency room with my new fiancé.

After an initial evaluation, I was told I most likely had a kidney infection and they ordered an ultrasound. I was hospitalized and, when the results of the ultrasound came back, the doctors started saying they saw something, but they couldn’t really determine what it was and wanted my infection to die down a bit before confirming a diagnosis. I don’t remember when the “c” word was uttered for the first time, but I do remember getting the phone call in the evening at home, from the surgeon telling me that I had cancer. It hit me like a brick.

Of all the places for me to get cancer, did it have to be my precious kidney? My one and ONLY kidney? Talk about shock and awe…

Kidney cancer really only responds to one thing, surgery– to remove the tumor. As someone who carefully guarded her only kidney, the last thing I wanted was for it to be cut into. However, I certainly didn’t want to walk around with cancer–does anyone–so the surgery was scheduled.

My surgery was successful and I recovered just fine. Now when you have cancer surgery you think, well, that’s that; they cut it out! No more cancer for me, let’s celebrate! It’s such a downer when you go for your one year check up and the doctor says, let’s do a chest x-ray because that’s where this kind of cancer goes next. Well, so far so good, no cancer in the kidney or the lungs and my follow-up will only be the chest x-ray and my prognosis is good. Bullet dodged.

Of course another cancer scare has come & gone since then… Just recently an innocent enough looking line on my fingernail was biopsied and luckily did not turn out to be melanoma. It did require the removal of my thumb nail and a few days of quite a bit of pain, but the melanoma-free diagnosis was worth it.

But both Paul and I know plenty of people going through similar, even more challenging cancer scares and long-drawn out battles. Nothing makes you feel more vulnerable than cancer because it never seems to go away, you feel like it’s always lurking.

obliterideIt’s easy to not think about cancer and donating for the cause when you aren’t affected personally by it. But when you or a close friend or relative gets cancer, you can no longer ignore the fact that it’s a real and horrible disease. It also makes you want to rid the planet of cancer. And that’s what the researchers at Fred Hutchinson Cancer Research Center where Paul works are trying to do. This is why I believe so much in Obliteride. And why Paul is riding in Obliteride, why I am volunteering, and why we are donating to the cause as well.

Please consider donating to Paul’s Obliteride campaign.

tripledAnd because I believe so much in the cause, Paul and I will match all donations between now through Sunday, July 7th, up to $500 dollars total. And because I work for Microsoft who matches donations at 100%, any money you donate will therefore be tripled! How’s that for some incentive to donate today?

Suzanna Litwin

Post Script: Suzanna’s challenge raised $550 so we matched it with the limit of $500 which Microsoft will match again.  Thus, her challenge raised at least $1,500 (not counting the fact that some of the donors also worked for Microsoft and will be submitting their donations for matching as well).

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Why Obliteride and Fred Hutch?

PaulOnBikeSammRiverTrain3_thumbIt’s been over nine years since I started working at Fred Hutchinson Cancer Research Center in Seattle, or as we like to call it “Fred Hutch” or just “The Hutch”.

Fred Hutchinson Cancer Research Center was established in 1975 by Dr. William Hutchinson in honor of his brother, Fred, who died of lung cancer in 1964.

So What’s So Great About Fred Hutch?

So what’s so great about The Hutch? Fred Hutch is truly a world-class research center dedicated to curing and reducing human suffering from cancer, AIDS, and other diseases.

One measure of the strength of a research institute is the awards it receives and many people will agree that the Nobel Prize is one of the highest honors in science. Well, three Nobel laureates (that means they each won a Nobel prize) have walked the halls of The Hutch. They are…

  • Donnal Thomas, who won his Nobel prize in 1990 for his ground-breaking work in bone marrow transplant. Donnall died in 2012.
  • Lee Hartwell, who was awarded the Nobel prize in 2001 for his work in understanding cell division. Lee was the center’s president for many years and many days could be seen riding his bike to work.
  • Linda Buck, who received her prize in 2004 for her pioneering work in the human olfactory system. I remember drinking champagne in her honor the day she was awarded the prize.

Of course, that’s just three of the fine scientists of our institute. Much amazing work happens here every day, including work in basic science, clinical trials, bioinformatics, and cancer prevention. In future posts, I’ll share some of the projects I have had the honor to work on while here.

Fred Hutchinson Cancer Research Center (1)In the mean time, you can read more about Fred Hutchinson Cancer Research Center at fhcrc.org or wikipedia.

What’s Different About Obliteride?

obliterideOkay, let me be frank, the bike ride is just a front to raise money for this amazing institution. (Mind you, that’s not meant to disparage the amazing feats of athleticism that are part of an endurance event like Obliteride. Most participants will train for months to get ready and will endure somewhere between moderate discomfort and extreme pain in riding the event.) I mean that’s true for any event that raises money for a cause. For the most part, however, the event itself is not the important thing: it’s what happens with the money.  And, unfortunately, many events have a fairly high overhead, which means that for every dollar you donate, only a portion goes to the organization benefiting from the event. For example, I rode in the Ride to Conquer Cancer four years ago and was saddened to learn afterward that less than 50% of the money I raised made it to the organization. To me, that was a huge disappointment and a reason I have not ridden again for that event.

What is awesome about this event, however, is that a number of sponsors (as well as the participant registration fees) completely cover the expenses of the event. This means that 100% of every donation goes to the benefiting organization: Fred Hutchinson Cancer Research Center.

Let me repeat that: 100% of every dollar you donate goes to the ground-breaking and life-saving research of Fred Hutchinson Cancer Research Center.

Now, that’s something to get excited about.

How Can You Help?

it’s simple, just click this button to donate to Obliteride and Fred Hutchinson Cancer Research Center.

donate now

Thank you.

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