Sometimes your scans come back with less than good results; “progression” is occurring, which means your cancer is growing or has spread elsewhere.
In the case of my own journey, I was quickly flunking out of chemo regimens! My response from the first regimen of chemo – FOLFOX – was fantastic after the first six infusions. I remember feeling on top of the world when my oncologist walked into the room with a huge grin telling me “Good response!”; my eyes were wide open and dilated in ecstasy! At the time both the oncologist and I agreed to continue with the same treatment plan with no breaks or reductions in strength.
However, after an additional six treatments, my scans showed a result that sent a chill down my body. “It looks like your cancer is progressing aggressively”. Meaning my tumors in my liver and colon were no longer responding positively to my current treatment. “How the hell does that happen so quickly” I remembered telling myself, “Everything was perfect a few weeks ago”. These are infamous words that many cancer patients will hear. Cancer is relentless; while it responds often to chemotherapy, it has a nasty habit of finding ways around medical cocktails. One silver lining was that the grows were contained within the same organs as my previous scans, with no further growth over my baseline scan.
One of my most hated words in the cancer community is called “progression”. Before my diagnosis, that word had a positive meaning; things were moving along at a great pace – “My career is progressing towards a raise”. However, when you are in a cold empty room with your oncologist that is the last word you want to hear from them!
Jonny “posing” for his nurses while on one of his FOLFIRI regimens (April 2019)
Another word that you may hear in conjunction with “progression” is mutated. “Your cancer has mutated and is no longer responding to your current treatment”. In this case, the word “mutated” can be misleading and instead of referring to something out of Dr. Frankenstein’s laboratory, it relates to your cancer having a solid defense against the very drugs that are subjecting your body to overwhelming fatigue, hair loss, vomiting, weight loss, and depression – among the most popular in my experience.
This is certainly not the end or a reason to give up. While this was not the end of the line for me it was a huge wake-up call to my need to plan in advance. I doubled down and decided to focus on my offensive plan. The oncologist recommended the next standard chemo regimen – FOLFIRI. Even pronouncing the word FOLFIRI makes it sound intimidating.
Another lesson I learned was that chemo bioaccumulates in your body, meaning over time the toxins are negatively impacting your blood counts, enzymes, and even your mindset too. During your treatment journey, you’ll undoubtingly come across the phrase “Chemo brain” which is an actual recognized condition that occurs in many individuals who have been on chemotherapy. While there are no set parameters on how much chemo will cause this condition, through my own experience it wasn’t something I tracked until well into my FOLFIRI regiment. It started with a few forgetful tendencies which I typically would contribute with my ADHD diagnosis, later jumping to concentration and my loss of focus on an ongoing basis. This eventually turned chronic and its’ my personal belief that chemotherapy helps stimulate ADHD symptoms that I once had inhibited with activities like yoga, meditation, and goal setting activities.
I joke A LOT when it comes to this condition, often employing dark humor to stimulate the complaints that I have with my disease in an open delivery method to the various people I talk with daily. “Team Pretty” is among my most used phrase, especially when I forget to pass the ball to my teammate or forget my position on the pitch. On a more serious note, my diagnosed condition of ADHD also contributes to my mental exhaustion. I’ve noticed that my body has huge swings of positive and negative energy, which is sometimes often hard to control. Years prior to being diagnosed with cancer, I was aggressively prescribed Vyvanse, an adult ADHD medication that was designed to improve focus while reducing hyperactive tendencies. While at first, this worked during the summertime, heading back to my junior year at college it was the complete opposite. I remember blacking out randomly, sleeping in, avoiding classwork; while focusing completely on my part-time sustainable office events manager position, and leader of the University’s LGBTQ organization.
I swore off drugs after that terrible experiences, despite almost flunking out of college. Instead, I used meditation and healthy eating habits to help stabilize ADHD tendencies, harnessing a great outcome. Fast forward seven years later; chemo flowing through my veins on a nearly weekly basis, that’s when that control turned off and my symptoms started to gradually grow.
A “special” package of all the pre-meds and chemotherapy Jonny receives each visit (August 2019)
Switching to a new treatment plan sounded terrible, especially when I knew the cancer was “winning”. I remember telling my oncologist “I’m taking a chemo break!”, she shook her head in disbelief. Thanks to incredible friendships a friend of mine invited me to Grenada, a tiny island nation in the southeast Caribbean, where his uncles owned a beautiful house. This weeklong trip was MUCH NEEDED; never realizing the power of “Treat Yo Self Days”.
This was my first break since starting chemotherapy – mistake #1.
Jonny’s trip to Grenada (March 2019)
Jonny with his friend Aaron and two Uncles, at their seaside home (March 2019)
There was a trade-off in switching to this new regimen; the replacement of Oxaliplatin which caused my extreme cold-sensitive pain from neuropathy with a new drug called Irinotecan. This was sort of exciting!
FOLFIRI is the second line of deferment of typically colorectal cancer patients, like me, who are or have progressed to stage III or IV). You’ll notice some similarities.
Folinic acid (leucovorin) “FOL“, Fluorouracil (5-FU) “F“, and Irinotecan “IRI”. Sometimes you will see additional add ons to this regiment so don’t be surprised if your oncology team refers to adding those other drugs too.
One important thing I will put out there (I am not a licensed medical professional) is to do your diligence with researching and seeking additional medical opinions. As you start taking a chemotherapy drug you will undoubtedly run into another word called “Resistance”. This often comes up with your oncologist if you are progressing; meaning your cancer has now adapted to your chemotherapy regimen and is no longer responding positively. Just like the other term I mentioned in my previous post “Mutated”.
This is where you have to start mapping out your available options; chemotherapy, immunotherapy, or other medical cocktails that are still in play. Remember, you can also dip into other forms of treatment like diet, exercise, and even the use of medical cannabis. That’s right, that “hit” you might have had during a college party could actually help your cancer diagnosis – in terms of significantly reducing your side effects with the possibility of having synergistic effects against your cancer!
Jonny doing some yoga (October 2019)
Fluorouracil (5FU) was still in my treatment plan, meaning another chemo pump that would be attached to me for 48 hours. To me, this drug in the regimen was the most potent – since I had to constantly see, touch, and occasionally move it so I could go to the bathroom. I learned that getting hydration fluids after getting the pump removed was key to overcoming the side effects. It gave me just that extra bit of energy to get groceries and plan for a long weekend of Netflix with my two cats.
Jonny’s two cats Bellamy & Wesley [left to right]
The new add-on drug Irinotecan had no new side effects, compared to the array of chemo I had received before. Although I did experience more fatigue. During this infusion, It was piggybacked with Leucovorin, just like Oxalyplatium was in my FOLFOX regimen.
One specific “add-on” my oncology team recommended was called Avastin. Its’ primary goal was to help shrink the tumor’s supply of my surrounding tissue, which in turn can help in adjunction with other treatments, like my newly prescribed FOLFIRI regimen. I also remember my oncology team recommending another drug called Cetuximab (Erbitux). This would in theory work with the chemo to inhibit other pathways that my cancer could be used to grow. I considered it but after talking with my second oncology team at Sloan Kettering in New York City, I decided to not add that one just yet.
As it turns out Cetuximab can be used as a separate regimen if the previous treatments stopped working. This was key for me – remember to plan. Don’t think cynically; think realistically! I was less than two years into my cancer battle, so to live longer in hopes of a possible “cure” or to find a way to chronically live with my cancer, I needed time.
Avastin (Bevacizumab) is not a toxic chemotherapy drug like its predecessors and has small and less concerning side effects; mostly related to eye discomfort or dryness. Its job is to seek out stop growth and any leaks to abnormal tissue cells, the push for this is because that tissue cells surrounding your tumors is at very high risk to succumbing to cancer.
However, Avastin did have one concerning side-effect – internal bleeding or hemorrhaging; specifically intestinal hemorrhaging. This scared me more than the doctor let on since I was still actively playing soccer 2-3 times a week. There was no question from my oncology team, “DO NOT play soccer!”. I can tell you this if they were to read my answer below…let’s just say they’d be rolling their eyes to the back of their heads.
Jonny playing with his Soccer Club in Albany, NY (October 2019)
HELL YES, I played. I even felt better as an individual player too. It’s funny how cancer can be more of a mental game than a physical one. The drive to keep living on is all in your head. That is where you must start if you intend to outsmart your diagnosis. Even with my cancer taking a turn for the worst, I was thriving on the pitch. My soccer performance was somehow excelling. Always invest your time in a hobby or passion, it helps divert your mind from pain and a negative mindset.
As I was breezing through these treatments my oncologist mentioned a way to learn more about my specific cancer and the underlying conditions that could help me align with more treatments or possibly a clinical trial – down the road as a last resort. As fantastic as this sounded, she referred to my insurance for approval, which as we all know living in the States is a roll of the dice. Insurance companies notoriously make it extremely difficult to get approved for these costly tests. Requiring one or two doctor recommendations and a review board – which in my case was a lone oncology nurse that my insurance company goes through for medical approvals.
FoundationOne testing results show the known tumor and genetic mutations. Allowing oncologists to help patients, like Jonny, find less toxic and targeting treatments.
Fortunately, my insurance approved it within ten days (very quick compared to others patients), and my previously sampled tumor (that was collected during my initial diagnosis biopsy) went for genetic testing. The test took two weeks to complete, and the results still entertain me to this day. Not only did the test (FoundationOne) show my tumor’s mutations but it also highlighted my genetic condition that my cancer resulted from – Familial adenomatous polyposis (FAP).
This roadmap even gave me the altercations or deletions of my DNA that verified my FAP diagnosis. Along with that, I received numerous details about each mutation that my tumor expressed – with match-ups to current drugs that could help inhibit my specific cancer. It also verified that Cetuximab would be my next and last treatment in my oncologist’s “standard of care” approach.
My first scan into FOLFIRI showed “stable disease”, meaning that my cancer did not show measurable change. Disappointed as this sounds, this is actually great news. Remember no growth is also great feedback! There must be a curse on me, call it FOLFOX’s revenge. Three months later my second scan showed the opposite of my first – that aggressive growth is back!
Westly cuddling with Jonny, during one of his recovery days from FOLFIRI (May 2019)
Looks like another change is in the wind…this time the last defense my primary oncologist recommended before clinical trials – Cetuximab.
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Thank you for sharing your journey on this platform and for advocating for more transparency in cancer care – more people need to hear your story
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