Wednesday, March 27, 2013

Internal Pictures

External Pictures

Update and A Brief Description

It has been one week since my first chemo treatment, and this is the best I’ve felt in two months.  I’m not skipping down the halls or anything since I found taking a midmorning nap in the library very necessary, but things are looking up.  I no longer need to take extended breaks to lie down in lab due to back pain caused by 5 minutes of minor bench work.  I can walk around at ease instead of having to sit down outside Qdoba to take a breather in the middle of my 4 block walk to work.  The best part is that my appetite is back.  I hit a new weight low last week at 145 lbs, and I’m hoping to gain some back before I start chemo again in two weeks.  Waking up early for the blood count to see when I could do chemo next and the disappointing results was a large contributing factor to the nap. 

My oncologist, Dr. Van Tine, was hoping I could start the next round on Monday, but my white blood cell count was too low when they checked this morning.  I think he saw a bit of disappointment in my face since he then half-jokingly mentioned I would probably need a bone marrow transplant if we kept it at two weeks.  Longer intermissions between chemo will mean a longer treatment time course, but it might help me keep a little normalcy to life.  It also means I will be able to finish out an experiment on Tuesday that I started this week, which I’m happy about as well.  (It’s been a little boring in lab lately without any experiments in the works to provide ambiguous results).

Now that we’re updated, I wanted to explain a little about my cancer.  Ewing’s sarcoma is considered a rare cancer and is a part of a larger group of cancers known (creatively) as the Ewing family of tumors.  According to uncited statistics, I am 1 out of 250ish people that will be diagnosed with this cancer this year.  It is largely considered a childhood cancer since most cases pop up during early adolescence.  However, the different varieties of Ewing’s can present themselves at various points in life. 

Ewing’s sarcoma is a lot different than more the prevalent breast, lung, colon, etc cancers out there.  There are no known risk factors or carcinogens like smoking or obesity that cause Ewing’s.  There are not any genes that are passed down which would predispose me or anyone else for Ewing’s.  It was a freak genetic mutation in one of my cells (probably a bone cell).  One chunk of DNA (the EWS gene of chromosome 22) broke off and attached itself to another chunk of DNA (the FLI1 gene of chromosome 11) to form a new fusion gene (the EWS/FLI fusion gene).  This cell then proceeded to divide uninhibited by the usual constraints to form a tumor.  Some of these cancerous cells then broke off from the original tumor (probably in my ribs) to metastasize and find homes in my vertebrae and pelvis.  This is the very simple version, but the sad thing is that we do know much about this new gene, what it is specifically doing, or how to specifically treat it.   So while we wait for new research to come out, I’ll be having my cancer cells killed the generic way of chemicals, radiation, and ice. 

*I am putting up some pictures to liven up the blog.  A few regular ones since my lab mates told me the current format was depressing and a few scans since I think they are cool to look at.

Sunday, March 24, 2013

The Story so Far

My name is Greg, I am a PhD student at Washington University in St. Louis, and I have Ewing's sarcoma.

It has been interesting getting used to saying that "I have cancer".  Of course, most people know in a loose sense what cancer is, the common causes, what organs are most common for it to pop up in, and that it kills people.  However, I work in a research laboratory with a focus on understanding the origins of gastric cancer.  I read about, hear talks about, and discuss the biology of cancer on a regular basis.  Research on different gene mutations, metabolic changes, the existence of cancer stem cells, and so forth are presented as we eat our weekly Wednesday afternoon lunch of Raccinelli's Pizza at our department seminar.  We throw around statistics about the prevalence and fatality rate of the various kind of cancer or disease that we are studying without a second thought.  My perspective changed quickly when my first MRI scan resulted in the discovery of a large tumor in my right chest.

To go back to the beginning, I've been having intermittent back pain beginning around October of 2012.  Once it started, there was always a dull pain right below my right shoulder blade which would periodically kick up in intensity to the point that my shoulder was throbbing and I couldn't walk more than a block without taking a breather.  I was more or less fine for the majority of my days, so I didn't object when the head resident at Student Health referred me to physical therapy (PT).  I was in PT and doing my exercises on a fairly regular basis from then until January or so with my pain getting progressively worse and more consistent.  I was working on my qualifying exam (a written and oral exam I had to pass to stay in grad school), and this allowed me to spend bad days reading and writing for my exam.  After I passed my exam at the end of January 2013, I had another appointment with PT where we decided I should go back to see the MD at Student Health.  From Student Health, I was referred to Orthopedics since they still believed that it was something I could work on mechanically with exercises.

My Ortho appointment didn't solve any mysteries, but they took some X-rays, and saw some weird "shadows" and a slight tilt to my aorta.  This lead to 3 MRI's, a contrast CT, and a PET scan.  The first MRI and CT established I had a large "mass" in my chest, this mass needed to be removed surgically, and I was told what the surgeon's name who would be performing this operation.  This was probably one of the worst phone calls in my life.  The PET scan was planned after I talked to my surgeons about my approaching operation was to see if I had any more masses in my body, and sure enough I have a couple on my pelvis, and I have a vertebrae which is pretty well cancer ridden.  Thankfully, my case was taken over by Dr. Brian Van Tine who has set me on a course to hopefully rid me of this shit in the next year in a half with a barrage of chemo, surgery, cryoablation, radiation, and more chemo.

I was given the official diagnosis Thursday, March 21, 2013.  I started chemo that same day since Dr. Van Tine anticipated the diagnosis and wanted to begin treatment immediately.  So far it hasn't been too bad.  I am a bit nauseous and take naps more often.  The thing that is bothering me the most right now is I smell different now and have a constant strange taste in my mouth.  My back pain, which greatly reduced my mobility and ability to function, has for the most part evaporated away.  The good doctor said that people start feeling relief within the first few days as the chemo starts shrinking the tumors.  I didn't quite believe him at first, but whatever pressure was being put on my nerves due to my vertebral and chest masses has greatly diminished.

My next chemo treatment isn't until next week, and I'm heading into lab (my job) tomorrow to try to get some of my research in order before the next round kicks in.  My lab mates and boss have been extremely generous and supportive during this whole ordeal, and I can not thank them enough.  This includes all of my family and friends who have extended their support too.  

*Also for everyone who isn't a science nerd, plants and animals that researchers use to investigate their questions are known as model organisms.  Since my tumors have been biopsied for both histology and genomic sequencing, I (as my good friend Danny suggested) can now be seen as a model organism.  Especially if Dr. Van Tine, who runs his own lab, decides to inject some of my tumor cells into some of his mice (which would be really really cool).