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Posted 2014-04-21T04:36:26Z

Frequently Asked Questions and Background (updated 5/18/14)

From Jerome: FAQs (Warning: may contain graphic descriptions)

What kind of Cancer do you have? Stage 4B colon cancer which has spread to my Liver (12-15 nodules up to 2.5cm in size), and lungs (40-50 nodules up to 1.5cm in size).  

What is your treatment plan so far? I'm on a chemotherapy regime called FOLFOXIRI which includes 4 drugs (FOLinic acid, 5-FU, OXaliplatin, IRInotecan).  Additionally they have me on Avastin (which is crazy expensive btw).  This regime, administered through a port installed in my chest that feeds into my superior vena cava, is one of the most intense available for colon cancer patients, and I opted for this to attack the cancer as quickly as possible, at the cost of much stronger side effects.  After 6 months of this regime, we will determine at that time whether surgery or another treatment is necessary based on CT and CEA results. 

What are the side effects like? Check out my posts after infusion 1 and infusion 2 for the deets on the side effects.

How do you feel? I have accepted the cross I have to carry, and I believe that God does not give us what we can't handle, so I feel blessed to know that he thinks so highly of me to give me this obstacle.  Further, knowing that I have the support from everyone here on this site, and wonderful family and friends to help out, I am confident we'll get through this.  I am optimistic and focus on what I can control.

What was the prognosis given by the doctor? To put it bluntly, 2.5 years was quoted by 3 different doctors.  This was based off the information available on the average colon cancer patient who is 65 years old.  They mentioned they expected my situation to be different because I have youth on my side, but but unfortunately there isn't a lot of information for stage 4 colon cancer patients that are my age.

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What is the background? 
For a couple years, I noticed a little blood in my stools irregularly and didn't think anything of it, assuming it was associated with workouts.  Within the last few months (January - March 2014), I noticed that I've had to go more frequently, and the blood has increased quite a bit.  

How were you diagnosed?
I was scheduled to go on a business trip to India in early April 2014, and thought I should get this looked at before I left the country, so I saw my regular doctor on the Microsoft campus.  He took stool samples and blood tests and said that I should see a gastrointestinal specialist because there were blood and white cells found in the stools. The GI specialist performed a colonoscopy (on 4/1/14) on me, and when I woke up from being knocked out, he sat down and said "I have some bad news".  It was at this point I was thinking he was going to tell me I have Crohn's disease or IBS, but he said "we found a large tumor in your colon, and its likely cancerous".  He also mentioned the tumor was blocking 2/3rds of my colon.  For those curious, it's the tumor is located in the sigmoid colon.

That's when I was floored.  He said he took a biopsy of the tumor and that we'll get the results in a few days.  He called on Thursday (the day Sam became a doctor =) ) to tell me that the blood test showed high markers consistent with colon cancer, and that's when I began preparing mentally for accepting the fact that I have cancer.  On Friday (4/4/14), he called to say that the biopsy results came back and it was confirmed to be cancer and I should get a CT scan to see if the cancer has spread.  

How did we get to stage 4?
On the following Monday (4/7/14) after a bit of drama between the insurance, doctors, and imaging location, I had a pelvic/abdomen CT scan.  On Tuesday, the doctor called to say that the cancer has also spread to my liver (both lobes) and possibly my lungs (the CT scan showed the bottom of my lungs, but didn't go very high) making the cancer stage 4.  The doctor was insensitive in communicating this, and it felt like he was rushed to get off the phone with me after sharing this devastating news.  After a bit of crying with Sam, I got on the phone with Seattle Cancer Care Alliance (SCCA) to schedule my appointment.  SCCA had the option to meet with a doctor on Thursday, but after doing research there was a doctor that I wanted to meet with who wasn't available until Monday.  I thought it would be best to wait a few days to meet with the preferred doctor.

How did the meeting with SCCA go?
After a 6 long days of waiting, Monday (4/14/14) was the day Sam, Caleb, my parents, and I went to SCCA to meet with Dr. Anthony Back.  This particular doctor specializes in GI oncology, was a Stanford undergrad, Harvard Med school grad, has been with UW/SCCA for almost 30 years, teaches oncology at UW, and was voted "Top Doctor" in Seattle's 2012's survey.  Meeting with him confirmed my decision to wait, as he was very compassionate, thorough, answered my slew of questions, and made me feel very optimistic about treatment.  He sat with us for over 90 minutes answering our questions, telling me what I can expect, and even walked us through the CT slides!

Dr. Back also mentioned that the average colon cancer patient is 65-70 years old, and based on age, I am in the 1% of colon cancer cases.  Because the cancer manifested in such a young age and in someone relatively healthy, he suggested I get genetic testing completed to see if there's a specific mutation that could be passed on to Caleb so we know now.

What is the treatment plan?
I will be taking FOLFOXIRI + Avastin, which is a cocktail of 5 drugs administered through a port that was installed in my chest that delivers the chemo directly to my heart.  This particular drug is stronger than the standard FOLFOX given to metastatic colon cancer patients, because it adds the "IRI" part of the name, which has been proven to shrink tumors faster, but is significantly tougher on the body.  Because I am young, I am fine with a bit more short term discomfort to obtain better results.  This initial regimen will be approximately 6 months.

After the 6 months are up, we'll see how the tumors have responded to the chemo on my liver and colon.  At that point, we'll evaluate surgery, which would be optimistic, because that would mean the tumors have responded well to the chemo and we're now willing to pause the chemo to perform the surgery (and associated recovery time).

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