A Very Good Day on the Battle Front! (CT Scan Results et al)
Scanxiety noun : the tension which builds, particularly among those who have or have had cancer, as they move towards their regular checkup scan.
All cancer patients approach scan days differently. I have friends that get so nervous approaching a scan they literally have to take anti-nausea medicine. On the opposite side of the spectrum, I have friends that manage to stay quite sanguine as their scans approach. Still others are simply fatalistic – and try to just accept that the scan will show what it will show… They feel nothing is gained by thinking about it until the data arrives (in theory logically correct) and they have the mental will power to not succumb to worry (in practice an incredibly impressive feat).
How do I approach scans? For me, although I am usually an eternal optimist – mentally that breaks down for me as scans approach & I actually do suffer quite a bit from scanxiety. I think I struggle with approaching scans because normally my cancer is a somewhat nebulous foe – I know it is always there but it is like something evil, its exact form partially hidden in the shadows. What is happening inside my body – are my tumors growing? Shrinking? Spreading? Stable? To me it feels almost like pre-scan, my cancer status is in a kind of “quantum superposition” which doesn’t collapse down into a definitive reality until its CT-scan-observation, like a neoplastic version of Schrödinger’s cat. It is that coalescing of a range of possibilities into a known, factually realized real-time foe that is incredibly scary thing to approach & witness. Especially in your own body. For most of my scans, approaching them has felt like I was being forced to play a game of Russian Roulette – laying in the scan chamber feeling the trigger get pulled – and then anxiously waiting to hear the results to find out (when that pseudo quantum state collapses into reality) if there had been a deadly bullet in the chamber. This is not a particularly optimistic mental picture and it goes against my standard personality. That is what a few years straight of slowly & steadily worsening cancer, scan over scan, does to you mentally. Outside of the CT-chamber as you know, I work tirelessly to stay alive. Inside it, all I can do is lie there humble, powerless and wait for the results. A Mad Scientist is particularly uncomfortable to feel powerless. Once the data is known – the new data is then scientifically & medically reacted to with my usual eternal optimist vigor. The cancer then returns to its partially hidden nebulous state while the Mad Scientist gets back to work – until the entire process is repeated 8 short weeks later.
But today’s scan was different
For the first time in almost 2 years, I walked into the CT scan room Friday morning feeling optimistic. My gut was telling me that the current therapy I was on (Mad Scientist modified anti-EGFR) was working. When first formulating that treatment plan, my gut was telling me it was the right thing to do. When my perfect rash arrived that only solidified my optimism. There was a real struggle as I approached Friday’s CT scan between scanxiety and my gut instinct – and for the first time in a long time optimism won! I walked into the chamber with a smile on my face & left with one. A nice way to start the day. Well OK, admittedly there are better ways to start a day than a CT-scan but us Stage IV’ers take what we can get! ha
Thankfully my gut instinct was right!
The scan results came out particularly fast this time. My phone rang and I saw from the caller ID it was my oncologist. I took a deep brief and then answered quickly, optimistic but still scared. You don’t 100% defeat scanxiety easily. Not when a simple phone call can dramatically lower your lifespan. As soon as I heard the nurse’s voice on the other end of the phone, a huge smile came over my face. Nurses deliver good news. Doctors deliver bad news. I have not had a nurse call me with scan results since January 2013… My scan results were good! First of all: no new spots! That has incredibly been the case for almost 2 years now (a subject I plan to write about soon in a post) but it is always a relief to hear that this aspect of my cancer has continued to be stable since it is the spread of cancer which is the most dangerous aspect of having cancer. Now for the even more exciting part! For the first time in almost 2 years most of my lymph & lung spots shrank… and NONE grew – this includes the lung spots which have been slowly but steadily growing without pause for almost 2 years! Shrinking lung spots?!? Woo-hoo! That is the first time I have seen that happen and I was ecstatic. My current treatment is working! As a n=1 trial, I have no way of knowing if the beta-glucans are helping as designed – all I know is that my lung spots are shrinking for the first time –so full speed ahead!
ME FRIDAY MY ONC FRIDAY My ONC NURSE FRIDAY
(Not to mention at least a dozen more MDs & PhDs actively working hard right now on “Team Tom”!)
That was the single greatest news on Friday but Friday was actually incredibly action packed with good news!
I wrote a while back about the “Scientific Guardian Angel”and all of the incredible cutting edge genetic experiments being done on me. I know many of you have been curious what has been happening with that. I have been quiet about it because there are many experiments still in progress and data is just now starting to trickle in. I won’t go through all the details but I remain astonished by the incredible lengths that a now large “Genetics Team Tom” is going to in order to make me one of the best profiled cancer patients ever. Challenges have popped up along the way but instead of giving up, they have continued to work tirelessly to overcome these challenges. On Friday morning (shortly before my CT-scan results – busy day!) not only was a major challenge overcome via their incredible persistence – but also very cool results arrived from one of the genetics experiments – my liquid biopsy!
I had written previously that as one part of the battery of genetic tests, they were testing my blood for cancer DNA floating around in it using a cutting edge technology called a liquid biopsy . This amazing technology is right out of Star Trek Tricorder land and it will completely revolutionize cancer diagnostics and monitoring for most patients within the next few years!
From a simple blood draw, the liquid biopsy results confirmed:
- No signs of any melanoma micro-metastases that are too small for a CT-scan to see (at least to the liquid biopsy technology’s detection limit). Woo-hoo!
- Confirmation that the lung & lymph spots we have been trying to treat are CRC (we assumed they were CRC but this was never proven since a surgical biopsy would have been dangerous – and… I have had 2 different cancers already, so a 3rd is not impossible). It is always good to know you are trying to cure what you think you are trying to cure!
- Compared to the genetic profiling of my primary CRC tumor back in 2012, so far only one new known oncogenic mutation has appeared – (for the scientists in the audience SMAD4) The neat thing is that knowing this oncogenic mutation may open up the door to some potential targeted therapies for me to try. e.g. as shown preclinically here and here – but this is still under scientific & medical analysis. Due to my exclusion from most clinical trials for the next 3-5 years, having as many treatment options available as possible is especially meaningful for me. I need to tread water as long as possible waiting for those trials… Even just the HOPE of the possibility of additional therapies to try is in itself quite powerful!
My tumors are not surgically accessible (safely) so all of this new data is information that could not have been known without this new technology! Science and technology marches on! How can I not be an eternal optimist?
A third incredibly positive event from Friday (wow, they just kept coming one after another!)
In-between receiving those two great pieces of data – I had a fantastic lunch with a good friend who I haven’t seen for quite a while. He is incredibly well connected throughout companies and Cancer Centers and he gave me so much HOPE by speaking in general of the immunotherapy advances being made and approaching clinical trials – things not yet publicly known. Things which based upon unpublished preclinical data sound like they could be incredible new advances and strategies to push immunotherapy successes into more and more cancer types (CRC you may be poorly immunogenic but I have my eye on you!). I have mentioned many times that with the unprecedented HUGE efforts being undertaking in parallel on solving immunoonology at all the big drug companies, countless small biotechs, all major research Universities and all Cancer Centers –I can’t not be optimistic! It is like watching a sputnik race moment in your own profession – a once in a lifetime event. Hearing this echoed by someone even better (much better) connected to other institutions than I am, I walked out of that lunch feeling so grateful to be given that confirmatory insider view that immunooncology research is exploding right now with a deep backbench of new medicines steadily heading toward clinical trials. Talk about walking out of lunch with a smile on your face. I know he reads my blog – so to him, thank you for the best lunch I have had in a long time!
For me it was a great day but I also know that close friends of mine were suffering today. I know this both by assumption as well as by direct correspondence. Us Stage IVer’s are a very close-knit family. My Facebook friends list has at least tripled since I became Stage IV and many of the Stage IV’ers I talk to are not even on Facebook!. I love how technology has allowed us to come together to fight our common foe… That is one place where the war analogy works so nicely for cancer. I’m fighting on one battle line & I won a battle today. But on other fronts, the war continued to rage on – indeed after a brief respite, I know the enemy is already regrouping on my front as well…
But a part of life is celebrating battle wins despite the wars, so celebrate I will. All of Friday’s events. How am I celebrating? A pizza dinner 🙂 with the family (shhh don’t tell my cancer nutritionist!), quality family & friend time and then to cap it off I’ll be running a team triathlon organized by my oncologist on Sunday!
After a brief celebration break this weekend, it will be back to battle. On both a patient & scientist level I was inspired by Friday’s events. This war on cancer will be won. I guarantee it. My gut tells me that — and my gut has a pretty good track record. The only question is timing. Will it happen fast enough for me? With today’s events and the incredible & never imagined possible support from Team Tom that has gathered around me – I know that I am one more significant step closer than I was yesterday to making it to that ultimate finish line – winning not just a battle but winning my entire war.