Of Dice and Men
Sometimes you just gotta roll 'em...
“There is no pain so great as the memory of joy in present grief.”
- Aeschylus
[note: original publish date January 6, 2025]
Four days before turning 30 I joined my family in burying my grandfather. An integral part of my upbringing and entry to adulthood, his death was as big a loss as his life had been blessing.
Fast forward a decade to December 2024, when three days before leaving my 30s I committed to start a new - to me, and to science - cancer treatment.
Whether it was the entry into my 4th decade years ago, or now the launch of my fifth, it seems fair to say the universe sends mixed milestone messages!
I don’t remember how I previously dealt with this duality - death alongside a celebration of continued life. But this time around there was a lot of staring off into space, some healthy distraction (the holidays make that easy), and a last minute gut-level decision to hop a plane and go somewhere that I could move my body in the sun.
So, I write this seven days into the new year, sitting in a coffee shop in chilly San Francisco having just landed from five days in paradise, aka Kauai. I’ll be en route soon to the doctor, still wearing sandals with sand stuck in the tread, unshowered but as cleansed as I can be of the year behind, ready to face the (clinical) trial - and new decade - ahead.
And with that, on to the updates.
What’s Happening (medically)
January 9th I will start a clinical trial of a drug combo that, if successful, promises sustained tumor treatment + a significantly lower toxicity than the other options on the table.
The Cliff Notes*
Two drugs: lenvatinib (brand: Lenvima) and pembrolizumab (brand: Keytruda)
Daily pills + one infusion every six weeks
Both drugs already FDA approved for other cancers
Phase II trial, no placebo (I will be receiving the active ingredients)
Possible (dangerous) side effects include high blood pressure, thyroid failure, liver damage
Efficacy is defined as stability or shrinkage – anything < 20% tumor growth
If well-tolerated and effective I can stay enrolled in study for two years🤞
My oncologist at UCSF is the principal investigator, so I’m able to keep my care team (mostly) consistent. From what I understand I’m the second person to be enrolling in the study. You’re welcome, future NET patients!!
The trial includes daily tests + weekly doc visits for the first six weeks to measure if and how my body reacts to these new magic formulas.
Stay tuned here for updates – I mean, who needs NFL playoffs (I see you, Niner fans :-( ) with Katie’s Blood Pressure Season just starting!!
Remind me, what’s going on?
I had surgery in July 2024 to destroy all known disease - at that time 10 tumors in my liver.
Since then I have had new lesions (tumors) grow, also entirely in my liver:
How many?
I’ve been told “13+ → and that I “shouldn’t get into the habit of counting tumors”
What size?
I’ve been told everything from “very tiny” to “a lot of new disease” - ugh, doctors
But objectively all tumors are </= 1cm, and less than 1% of my total liver is affected
Pace of growth?
Unknowable right now, but presumably at least the same as before (grade 3, faster/more aggressive than some other forms of this cancer)
Why do a clinical trial? Does that mean you’ve run out of other options?
In the simplest of terms, this decision, like all decisions in Rare Cancer Land, followed the formula:
hopeful efficacy - toxicity + future options + gut feeling - personal biology
Fortunately there are many conventional (and insurance-approvable) treatments we’ve yet to try. But as this disease is incurable, it’s understood I will, eventually, get to those - collect the whole set, if you will.
Right now is a unique time, and these are unique drugs to be able to access as they represent the cutting edge of cancer treatments overall
Which means we’re taking a shot with the biggest guns that have the least likelihood of hitting unanticipated targets, during a time the disease is small enough to leave room for other options should this one fail.
So easy! And it only took [does math] approximately 14 hours of conversation + countless more in scans, undergoing labs, and generally being poked and prodded to reach this conclusion.
What’s the nerdy technical science stuff?
Given the speed with which disease returned, not to mention the many complications, another surgery is for now off the table. Which would normally lead to the following options for treatment:
Chemotherapy (again)
either the same pills I took before or, because they failed to drink anything and didn’t have lasting effect, likely a more intense/aggressive drug
acronym for peptide receptor radionuclide therapy, which is a very cool use of radioactive little trojan horses that are infused into the body and deliver tumor-killing weapons once absorbed by the tumors
using a vein to snake up to the liver and deliver localized radiation or other energy to kill tumors (and a certain blast radius around them)
Biologics - I know basically nothing about these yet
In contrast, the clinical trial treatments fall into two new/different categories - with distinct mechanisms at work for each.
lenvatinib = targeted therapy
aka: hacking into the tumor cells and (hopefully) interrupting the signal that otherwise triggers the cell to divide (and the tumor to grow)
aka: keep them from getting bigger
pembrolizumab = immunotherapy
aka inspiring my body’s immune system to recognize the cancer cells as the intruders they are, and attack accordingly [footnote
aka: make them smaller / stop new ones
Both of these categories are, technically, non-toxic. I say “technically” because the definition of toxicity here is narrowly defined as carcinogenic, aka potentially causing secondary cancer.
This is particularly relevant as we assume, given the TP53 mutation, I will fall on the higher end of probability in contracting secondary cancers, especially with accumulated exposure (e.g. chemotherapy + PRRT = cumulatively… a lot)
Of course there is still a chance bad stuff happens, e.g. permanent thyroid damage, which feels pretty toxic. But in the world of risks and tradeoffs, this is considered the safest option set we can try to start.
And that’s all I have on this winter day with sun-kissed skin.
Wish me luck!
