It's back (distal cholangiocarcinoma mets)
Oct 21, 2020
It was a pretty shite summer (yeah, I’m looking at you COVID-19), but at least it was a “cancer free” time for the family and I, which I am extremely thankful for.
Historic summary
TLDR; On September 11th of 2018 I had the Whipple procedure to remove a pancreatic cancer tumor as well as a portion of my pancreas along with part of my stomach, gallbladder, bile duct and a portion of my intestines. During the procedure my surgeon also examined 57 lymph nodes, of which 11 where involved. This was unfortunate news, as it meant that there was a good probability of the cancer metastasizing somewhere else in the future. Denise and I chose to take the surgeon’s advice at the time, which was (paraphrased): “There is nothing wrong now, you’re disease free (NED). Don’t allow the possibilities of future issues interfere with your life today.”
Fast forward through Folfirinox treatment that ended in April of 2019 and then a lot of rehabilitation and training - I’m actually back in decent shape again (no where near where I was, but at least I can keep up with Denise mostly, or at least she let’s me think so)!
Today’s update
I had a normal checkup and bloodwork done in April of this year (2020) here in Dublin, Ireland, and my CA 19-9 (this is the marker that is generally looked for in pancreatic cancer) had risen a bit, but the CT scan that I had done at the same time didn’t show anyhing remarkable. The recommendation from my oncologist was to get the bloodwork done again in a few weeks. I did, and there was a pretty dramatic jump in the marker levels. At that time I got a PET scan to try and determine where (assuming there was at this point) growth was happening. The PET scan showed nothing remarkable either.
Next step was to get on a plane (yes, during COVID) to Houston, Texas to meet with my surgeon and oncologist at MD Anderson. They were already in receipt of the imaging and report from my CT and PET scans in Ireland, but requested that I get another CT scan there, as they felt the quality of the previous scans weren’t as good as they could be. The CT scan results looked as though the beast had made it’s way into my lungs. I had a bronchoscopy done in which they retreived samples from three different suspect areas. Two of the samples where determined to be cancerous (the same as previously).
There you have it; It’s back
Unfortunately there really aren’t any magic bullets for pancreatic cancer … so: chemotherapy. My first treatment this time around (Gem+Abraxane) was on September 11th 2020 (coincidental? as my Whipple was EXACTLY two years prior). I’ve now gone through 5 treatments (plan is to do 9 treatments over 12 weeks) as of today.
I have returned to my super-sexy hairdo now… one of the many wonderful side effects of the chemotherapy. Connor was happy enough to help me remove the majority of my hair after it started falling out in clumps! 😄
The new plan is to use chemotherapy to keep the beast under control for as long as possible, so we will see what my markers look like after these cycles complete and then decide on next steps.
The good news so far
My CA 19-9 marker was 3136 kU/L on September 25th, 2020. “Normal” is considered to be 0-37. As of today (October 21st, 2020) it has dropped to ~ 500 kU/L!
Although it was a shite summer, I’m extremely grateful for all the additional quality time and great craic that I’ve been so lucky to have with Riley, Connor and Denise. I’ve altered my mindset a bit in regards to COVID and now look at it as a “blessing in disguise” to be able to continue to be so close to the kids when, normally, at their age we most likely would never even see them (out with friends/school/first jobs/etc/etc). Which that reminds me to mention, both Connor and Riley got their FIRST JOBS this summer! Connor at Brewdog (accidentally pouring pints on patrons … ask him about that story, it’s a good one) and Riley working to help organize and shepherd kids for a summer “camp” at a local creche! We are so proud!
We hope that everyone is staying healthy during this tumultuous time and send our love to all!
