Saturday, February 08, 2020
Brad sent his blog today, so here is his update. My heart goes out to this very courageous young man.
CEA (Tumor Marker) FINALLY in Normal Range + Positive Scan Results
Journal entry by Brad Hook — Feb 5, 2020
The resiliency of the Kansas City Chiefs, much like the St. Louis Blues, was something to behold throughout the NFL playoffs. In all three games, they trailed by double digits and rallied to come back for the victory, none better than looking all but finished in the Super Bowl against the 49ers only to storm back in the final 8 minutes to take home the Lombardi trophy! Kati and I were at the AFC Divisional playoff game against the Houston Texans where they fell behind 24-0 and then put on a show to win 51-31, hands down the best sporting experience of my life given the non-stop energy of the crowd and win in the end. That makes two rarities that have now happened since I was diagnosed with Stage IV rectal cancer in October 2018: the St. Louis Blues winning their first Stanley Cup and the Kansas City Chiefs winning their first Super Bowl in 50 years. Both teams were the epitome of grinders, never giving up, even when it appeared they were all but finished. That is the same attitude that you have to have against Stage IV cancer because it can smack you back in the face at any given time. I am almost 16 months into this journey and I still have a decent sized tumor in my rectum as well as more mets than I would like on my liver (15-20+ with 3 larger ones), but I am happy to say that I can continue to grind away with all the chemo and since I have started treatment at Memorial Sloan Kettering Cancer Center (MSKCC) in NYC, the aggressive plan of attack we have launched on this monster is providing us with results.
First and foremost, my CEA (tumor marker) dropped to a new low of 2.9 in January, well within the normal range of 0-5. For those of you who have followed my journal from the beginning, my CEA started at 1060 when I was diagnosed, and fell to as low as 5.1 last spring after 12 rounds of aggressive chemo. From that point forward, it hovered in the 5-8 range, never going below 5, from April through my HAI pump surgery in late October. I came out of surgery and started treatment with it at 8.9. I am still sitting at 2 full FUDR treatments via the HAI pump to go along with 7 systemic treatments of the FOLFIRI since I started back on chemo post-surgery in November. I had my first scan since November last Sunday (January 26th) prior to my treatment on Monday at MSKCC. The positive / optimistic side of me still felt the pressure as we waited to see the oncologist on Monday to find out the results. My CEA had dropped to 2.9, so that had to be a good thing, and I continue to look and feel amazing, so I had that going for me as well. With that said, the CT scan showed decreased size in everything (upwards of 35-40% shrinkage with the liver mets as well as an increase in the calcification of them which is a sign of them dying off!) and nothing new!! Specifically:
(1) Largest liver met went from 5.9 cm x 3.2 cm to 3.9 cm to 2.6 cm (this met was around 9 cm x 6 cm to start)
(2) Second largest liver met went from 2.8 cm x 2.8 cm to 1.9 cm x 1.7 cm
(3) Third largest liver met went from 2.3 cm x 1.5 cm to 1.3 cm x 1.2 cm
(4) Mesorectal node (rectal mass) went from 4.1 cm x 3.2 cm to 3.5 cm x 2.5 cm
Overall, incredible results from the HAI pump chemo (FUDR) and systemic chemo (FOLFIRI)!! In addition to the scan results, my liver enzymes had come down enough for me to start back on the FUDR, albeit a 25% dose to start to see how my liver enzymes would react before pushing it up a bit more to 50% at some point. That may sound like a dramatic decrease in the dosage, but it is still incredibly toxic (75-100x the concentration compared to the systemic chemo).
Unfortunately, this is where the one setback of the day came into play. With the HAI pump, it is suppose to be filled up to 20 ML, whether with chemo or just saline / heparin / steroids. It releases 1 ML per day so when they get ready to refill it they are suppose to pull out around 6 ML. Well, this time, they only pulled 1 ML out of it, so they could not put chemo in it due to the risk, even though very low, that it was releasing more than 1 ML per day. It is uncommon for the HAI pump to speed up, with heating pads, having a fever, and pressure changes from flights being some of the things that can cause it to happen. I will not know until we go back to NYC on Monday, but what likely happened is it was only filled with 15 ML during my last visit to Saint Luke's in KC (this is the thinking they have at MSKCC, so they told us not to worry about it / be too concerned). As a result, I have not had any chemo in the HAI pump since December 16th (it was filled on the 2nd with 6 ML coming out on the 16th), but thankfully the systemic chemo continues to chip away at things while we wait on the next dose of FUDR.
Overall, I am beyond thankful for where things stand at the moment. In April, after 12 rounds of aggressive chemo, my Saint Luke's oncologist told us that things may be as good as they will get and that was the start of maintenance chemo. We did not like that answer and course of treatment for the indefinite future so we did some research and found our way to MSKCC. We had nothing to lose with pursuing the HAI pump for treatment and now we are seeing the fruits of that decision. The one thing I have learned on this Stage IV cancer journey is that you absolutely have to advocate for yourself and do your homework so that you are knowledgeable and aware of the range of treatment options that may be out there for you. I refuse to get complacent no matter how great I feel at the moment because it can all change with the snap of a finger. I am not afraid to take risks with my treatment, to do anything and everything to eliminate this cancer, because there is way too much I have yet to experience in life. My message to cancer is that no matter how much hell I have to go through to keep it under control, I will endure it and cancer will never have me. I hate cancer, it absolutely sucks and is not fair, and it wants to ruin and take away everything from me, but I will not be denied being here to take Emerson to his first day of kindergarten this fall, I will not be denied being here for Reagan's first daddy-daughter dance, and I will not be denied being here for every single milestone that they are set to achieve in life. With God by my side, cancer is up against a determined and unstoppable force.
In closing, I fell upon the following quote / phrase the other day:
"If God puts a Goliath in front of you, he must believe that there is a David inside of you."
I think it is apparent by now that there is absolutely a David inside of me and I am going to take that damn Goliath down.