Must ask questions for people living with metastatic disease
Unconventional options that extend lives and quality of life
When Dr. Dawn Lemanne told me "Four or five decades of large randomized controlled trials in the common cancers of adulthood in the metastatic stage have completely failed. Not one cure," she wasn't being pessimistic. She was pointing toward something better.
Dawn and her colleagues at Moffitt Cancer Center are pioneering mathematical oncology, using real-time data and evolutionary principles to outmaneuver treatment resistance. But here's the problem: most patients don't know these approaches exist, and most oncologists aren't trained in them yet.
If you're facing metastatic cancer, you need to know what questions to ask to access this cutting-edge research. Because your oncologist might have the tools Dawn described, they just might not be thinking to use them.
Real-Time Monitoring
Start with this: "Do you use liquid biopsies to monitor my tumor burden between scans?" Dawn tracks circulating tumor DNA monthly to see if treatments are working immediately, not three months later. "We need to know in real time whether this treatment with its toxicities is actually doing anything beneficial."
If your oncologist says they don't use liquid biopsies, ask: "Are there clinical trials available that include this monitoring?" Companies like Guardant Health, Foundation Medicine, and Natera offer these tests. Some insurance covers them for metastatic patients.
For hormone-driven cancers, ask about frequency of tumor marker testing. Dawn monitors PSA monthly for prostate cancer, CA 15-3 or CA 27-29 for some breast cancers. But here's the key follow-up: "Instead of driving my markers to zero, could we use controlled cycling to prevent resistance?"
Most oncologists aim to eliminate all detectable cancer. Dawn's research suggests keeping markers cycling between 25-75% of baseline might preserve treatment sensitivity longer. Ask: "What does the research show about pulsed dosing versus continuous maximum dosing for my specific cancer type?"
Functional Tumor Testing
"Can we test my actual tumor tissue against different drugs to see what it responds to right now?" Dawn takes live biopsies and tests them against various treatments, including unexpected combinations like metformin analogs or ivermectin.
"Most tumors are not sensitive to ivermectin, but every now and then there is one," she explained. The point isn't ivermectin specifically, it's testing your individual tumor instead of relying on population statistics.
If live tissue testing isn't available, ask about organoid testing or precision medicine panels that go beyond standard genomic sequencing. Companies like Tempus, SEngine Precision Medicine, and others offer functional testing approaches.
Critical question: "Are there off-label drug combinations we should test, based on my tumor's specific resistance patterns?" Dawn's colleague tests tumors "against all sorts of normal chemotherapy drugs, cisplatin, Taxol, those kinds of things. And also against things like a metformin analog."
Mathematical Oncology Access
"Do you work with any mathematical oncologists or have access to tumor growth modeling?" Moffitt Cancer Center has an entire Integrated Mathematical Oncology Department, but they're not the only ones doing this work.
Ask specifically: "Could we model my tumor's growth dynamics to optimize treatment timing?" Dawn's team uses "how fast the tumor grows if we withdraw treatment and how quickly it shrinks when we reapply treatment" to develop personalized dosing schedules.
If your oncologist doesn't know about mathematical oncology, ask: "Could we consult with researchers who use game theory approaches to treatment sequencing?" The concept is treating cancer like chess, anticipating the tumor's moves and setting up sequences where resistance to one drug creates sensitivity to the next.
Adaptive Dosing
"Instead of continuous maximum dosing, could we try adaptive or pulsed protocols?" Dawn's testosterone cycling study proved this works for hormone-resistant prostate cancer. Similar principles apply to other cancer types.
Ask: "What clinical trials are available for intermittent or adaptive dosing in my cancer type?" This is different from standard dose reduction for side effects, it's strategically using treatment breaks to prevent resistance.
Key question: "How do we measure whether pulsed dosing is working for my specific tumor?" You need the monitoring tools to make adaptive approaches safe and effective.
Comprehensive Optimization
"What lifestyle factors should I be tracking to optimize my treatment response?" Dawn uses continuous glucose monitors, sleep tracking, exercise monitoring, and gut microbiome considerations because "there are so many other variables that come into play and are active in a cancer situation."
Specific requests: "Should I get a continuous glucose monitor to see how food affects my blood sugar?" High glucose can fuel tumor growth, but individual responses to foods vary dramatically.
Ask about exercise protocols: "What does the research show about exercise during treatment for my cancer type?" Dawn mentioned the START trial showing vigorous exercise three times weekly during chemotherapy improved breast cancer survival, exercise as medicine, not just wellness.
Clinical Trial Access
"Are there any mathematical oncology trials I could participate in?" Don't just ask about drug trials, ask about trials testing new monitoring methods, adaptive dosing protocols, or combination approaches.
This connects to what Dr. Peter Kuhn emphasized about patient participation in advancing research sometimes the most important trials aren't testing new drugs but new approaches to using existing ones.
Second Opinions
"Could I get a consultation with someone who specializes in treatment resistance?" Not all oncologists are trained in evolutionary approaches to cancer treatment.
Ask: "Do you know researchers working on reversing treatment resistance rather than just managing it?" Dawn's work shows resistance can sometimes be reversed, not just delayed.
The Advocacy Framework
Dawn told me something crucial: "I think patients are the ones that need to be and want to be and should be in control of doctors and what we study and how we study it." Patient activism drives medical innovation.
Your questions matter because they signal demand for better approaches. When Jessica Gravel persistently advocated for better scheduling and access, she got results. The same principle applies to accessing cutting-edge research.
What mathematical oncology tools does your oncologist have access to that they might not be using routinely? How can you become a partner in designing your own precision approach? And most importantly, if these methods can make metastatic cancer truly manageable for decades, how do you make sure you're getting access to them now, not years from now?