I've been diagnosed with PNET on June 7th, 2025 at 42 with a wife and 2 year old son in Bangkok, Thailand. It's been an emotional rollercoaster for myself and my family, starting with an initial diagnosis of PDAC, thinking I only had less than a year to live, to finding-out it's Neuroendocrine tumors and learning I'd potentially have 3-5 years.
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Labs UPDATED Dec 3
I've gone through 2 rounds of chemo, 3 rounds of PRRT targeted therapy using Lutetium, and have now switched to CapTem due to compilations with an enlarged liver. Have also done 2 round of RFA ablation therapy to remove tumors on my pancreas that has been largely successful in removing/ controlling primary tumors in the pancreas. This has all happened since June 7, 2025, so things have been moving very quickly.
Most recent labs: (0 means the test wasn't run)
GGT: 813 → 603 → 478 → 999 -> 1,674 -> 1,263 -> 1,891 -> 0 (Increase may indicate worsening vascular flow in liver)
ALP: ? → ? → 126 → 176 -> 259 -> 257 -> 369 -> 599 (Increase may indicate worsening vascular flow in liver)
ALT: 322 → 170 → 37 → 41 -> 83 -> 53 -> 91 -> 154 (Increase may indicate increasing stress on liver)
AST: 53 → 68 → 67 → 69 -> 107 -> 95 -> 134 -> 0 (Increase may indicate increasing stress on liver)
Cancer markers:
CA 19-9: 2,384 → 743.8 → 629.3 → 738 -> 1212 -> 1,739 -> 0 (Still below baseline but likely impacted by RFA, stable CEA helps support this)
CEA: 11.1 → 7.4 → 6.1 → 6.7 -> 6.7 -> 8.3 -> 0 (Being relatively flat helps support hypothesis of stability)
Updates:
At this point the nuclear doctor and my primary oncologist have stopped targeted PRRT therapy while we focus on shrinking the liver. This is largely a preventative measure to keep options open for treatment in the future. As of the most recent labs, bilirubin have deteriorated, indicating liver function is decreasing along with higher inflammation evidenced by the spike in ALP and ALT liver enzymes. It's still at a manageable level, so the decision has been made to focus on the liver first, where CapTem has been shown to be more effective in shrinking neuroendocrine tumors.
Although prognosis improves with number of rounds of targeted therapy, I've been told that prognosis hasn't necessarily changed because targeted therapy is still working. The reason we're stopping is to give my liver a break and a chance to heal. In the future, PRRT targeted therapy remains an option for salvage therapy, which would be using another course of treatment to target the neuroendocrine tumors on my pancreases and liver. If CapTem works really well, there may even be a discussion to have the 4th round of PRRT therapy, albeit not in January 2026 like initially planned.
One other development is that we've removed ~1 liter of water from my right lung, which has done wonders for breathing. I'm now able to take full deep breaths, whereas it felt like I was treading water before. This is good because it indicates that the breathing problems are more of a mechanical issue that a cancer issue. Though now I'm experiencing a bit of swelling in my legs which may mean I'm still retaining water. There's also more swelling on the right side than the left which may indicate blockage which we'll be testing for tomorrow. Likely nothing, but still something to rule-out.
I've also started taking pain killers at night due to bloating and swelling of the liver. The pain killer literally takes the pain from a level of 8 to 0, which is amazing. Also taking a stronger sedative to help sleep, which got me 4-5 hours of uninterrupted sleep last night, which was also great.
What’s next:
Tomorrow I'll go through further testing to identify root cause of swelling in my legs, and if nothing is out of the ordinary, may be discharged the same day with medication for pain and a sedative for sleep. Then it will be back to fighting every day to strengthen my body through exercise, and avoiding foods high in salt to minimize water retention. I've also been given a medication that increases insulin sensitivity that will allow me to eat more sugary foods to help increase the amount of calories I'm consuming each day as I've lost a bit of weight also.
So future steps are if my liver shrinks, we either mover to round 4 PRRT targeted therapy or a controlled period of no treatment or effective remission. If the liver does not shrink, we keep switching to other modalities of treatment until it does. Not sure what happens if it never happens, but confident that it will.
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I've documented every step, not just the treatments, but the emotions, the wins, and the hard moments. If you're going through something similar, you're not alone. I'm sharing my daily journey on my YouTube channel. If this has been helpful for you, please like, subscribe, or share to help support the channel:
by MericanInBKK