The Chemo Crossroads
We’re in the middle of a big decision right now: whether or not Ben should move forward with chemotherapy. And if so, what type.
When his tumor was first found, we were told it was an early-stage lung cancer, likely cured with surgery. But pathology revealed something much rarer and more aggressive — a subtype called high-grade fetal adenocarcinoma of the lung (H-FLAC).
It’s so uncommon that there are only a handful of documented cases worldwide, and virtually no clinical trials or established treatment protocols. The recurrence risk is estimated to be somewhere between 25–40%, and when it comes back, it tends to do so quickly and aggressively.
That’s why this post-surgery period matters so much.
Right now, Ben’s scans are clear and everything visible was removed. But if any microscopic cells remain, this short window right after resection may be our best chance to reach them. After surgery, the immune system is still alert and the signaling pathways that usually help this tumor hide — like the CTNNB1/WNT pathway — are temporarily quiet. Once that pathway turns back on, it can make the tumor environment “cold,” blocking immune recognition and reducing chemo effectiveness. This is also why immunotherapy options won’t work for Ben’s tumor type. This tumor has evaded his immune system’s awareness.
So even though chemo often doesn’t work well in cancers with active WNT signaling, this unique period of 4-8 weeks right after surgery might be the one moment when it actually can.
The hard part is that there’s almost no data. No clinical studies on this tumor type. No proven playbook. So the standard treatment recommendation would be ‘do nothing and watch closely for recurrence’, but just waiting for a recurrence doesn’t sit well with us. Doing chemo is also not to be taken lightly and the toxicity risk is real.
We’re learning the biology as fast as we can, and making a bet based on what might work. We’re in touch with two of the leading researchers who have studied Ben’s exact tumor subtype, and they’re helping us think through the science behind every decision.
In the meantime, we’re doing everything possible to support his body through functional oncology — from supplements to mistletoe therapy.
Mistletoe extract has been used in integrative oncology for decades. It’s an injection done several times per week and works by stimulating the immune system, increasing natural killer (NK) cell activity, and helping the body recognize what doesn’t belong. In simple terms, it encourages the immune system to “see” any remaining cancer cells. Because Ben’s cancer is a cold tumor — one that hides from immune attack — mistletoe therapy helps turn that tumor environment “hot,” or visible again to the immune system. This can help his own body start to fight the cancer cells.
We’re also using evidence-backed supplements that target key pathways involved in Ben’s tumor biology. Sulforaphane helps down-regulate WNT/β-catenin signaling and support the body’s natural detox and antioxidant systems. Curcumin and resveratrol both inhibit NF-κB and STAT3 — pathways that drive inflammation and cancer cell survival — and they may work synergistically to further suppress WNT activity. Omega-3s help reduce systemic inflammation and support cell membrane health, while vitamin D3 + K2 promotes immune regulation and cellular differentiation. And medicinal mushrooms such as turkey tail and reishi enhance natural killer cell activity and modulate immune response.
There’s no single right answer here, just an enormous amount to learn in a short period of time, and choices to make with the best logic we can muster. Doing chemo and not doing chemo are equally definsible positions.
As I like to say, I’m currently graduating at the top of my class at the University of PubMed, and my mild neurosis is apparently our family’s competitive advantage.
We don’t have all the answers, but we’re asking the right questions. And we’re not slowing down anytime soon.
- Sharee
P.S. Ben’s pain from surgery is finally easing up! It’s still there, but significantly better. He’s on far fewer meds now, drove the kids to school this week, and even cooked dinner for the first time last night. Those small milestones feel big after the last couple months.
