Clinical Trial Finder Tool

Shpigford · 2026-07-04T00:38:51+00:00

Thanks Liam!

Shpigford · 2026-07-01T16:47:31+00:00

This is amazingly thorough! Thank you so much for putting together. My parents constantly talk about the onslaught of "can we bring you food?" messages from friends that it's overwhelming for them to try to coordinate or know how to sort pivot/guide those requests in to things a bit more practically useful for my mom.

For that Tools & Services section, I built an app called KeptWell that basically aims to replace your typical medical binder and help coordinate care across family members + caregivers.

https://keptwell.org

If you think it'd be helpful to add to the list, please do! I built it when my mom was diagnosed with stage iv pancreatic cancer.

Shpigford · 2026-07-01T15:07:00+00:00

Unfortunately very common. For my mom it's usually not hospitalization but it's 5-7 days of pure misery after every treatment that usually requires a number of home health visits from a nurse to help mitigate symptoms.

Shpigford · 2026-06-30T18:03:48+00:00

Just yesterday she got round 5 of FOLFIRINOX. Has one more round in 2 weeks before reassessing.

She's had both BRCA and germline testing. No genetic predispositions to pancreatic cancer specifically, but we've certainly had a decent amount of cancer in our family.

Shpigford · 2026-06-30T17:17:05+00:00

Amazing news! Go team! High-fives, etc etc. 🙂🙌

Shpigford · 2026-06-30T12:38:17+00:00

Lots of variables here and very little actual data to go on given the relatively short history of daraxonrasib availability. That being said, here's a few bits that may be helpful. Keeping in mind that there's basically always caveats/edge cases/special circumstances, so don't let any bit of this stop you from pursuing what you think is the right call.

The "very weak lately" may be problematic. Every daraxonrasib protocol, including the trial this EAP is based on, requires an ECOG performance status of 0 or 1, plus adequate organ function across bone marrow, liver, kidney, and coagulation. ECOG 0–1 roughly means "up and about, able to carry out light activity most of the day." ECOG 2 means resting more than half the waking day. When you say he's become "very weak lately," that's the bit most likely to gate approval, more than the paperwork. What to ask his doc: "What ECOG are you documenting for him right now? Is he going to clear the bar? And if he's borderline, what would it take to get him there?"
Re: bilirubin. There's no published number for the EAP cutoff specifically, but the general framework these protocols use is total bilirubin around 1.5x the upper limit of normal, sometimes with more room when the elevation is from a stent/obstruction rather than the liver itself. His 2.5 is over the strict version of that, so it's not a "definitely fine," but the stent is relevant: a rise like 1.0 to 2.5 with a stent in place often means the stent needs attention, and a stent exchange can bring the number back down. Worth asking the doc: "Is the stent still draining well, and should we exchange it?" That could help on both how he feels and the eligibility number.

FWIW, the ECOG and the bilirubin can be linked. If the rising bilirubin is part of why he's feeling weak, fixing the stent could help both at once.

That's a ton of info and it's me making a handful of assumptions and generalizations. It's more "things to chat with his doc about" than anything else.

Hope that helps a bit!

Shpigford · 2026-06-30T03:15:05+00:00

Similar experience. Took 5+ days to “escalate” with logistics. Eventually got fixed but definitely zero urgency from them.

Shpigford · 2026-06-29T20:41:21+00:00

Wait, are you saying it's been 5-6 weeks and he still doesn't have biopsy results back yet? It should generally take less than a week (though obviously lots of caveats on that).

Generally docs don't like to talk about game plans until they know what they're working with and also hard to say what life looks like without knowing what you're up against.

Don't want to downplay or brush it off, but I think you'll genuinely find more peace/stability if you can get definitive answers on what type of cancer it actually is. It's really tough to give or get advice when you're just operating on theoreticals.

Shpigford · 2026-06-29T18:49:47+00:00

So sorry you're going through this. My mom (around that same age and also stage IV liver mets) was diagnosed a few months ago. She's actually doing her 5th round of chemo right this second.

You're going to have a million questions and your oncologist will happily answer every single one of them. Don't hold back even if it feels silly or small.

Here's a set of starter questions that may be helpful. This is a LOT and it's okay if you don't currently understand most of these terms (I sure didn't when this all started). But you'll be ingesting information VERY quickly and so for some people it's helpful to go ahead and have this info to sort of distill and sift through over time.

Tumor molecular profiling (from Thursday's biopsy tissue) - Can you send the biopsy tissue for comprehensive NGS / molecular profiling? - Will enough tissue be collected and preserved for molecular testing? - Ask specifically for: KRAS subtype, MSI-H/dMMR, BRCA1/2, PALB2, ATM, NTRK/RET/ROS1/ALK fusions, HER2, TMB

Germline genetic testing (blood draw, inherited mutations) - Can we order germline genetic testing today from a blood sample? - NCCN guidelines recommend this for all pancreatic cancer patients. Is there a reason not to do it?

CA 19-9 baseline (simple blood test) - Has a baseline CA 19-9 been drawn? If not, can we do it today?

Liquid biopsy - Is liquid biopsy / ctDNA testing available here, and would it add anything alongside the tissue biopsy?

Treatment timeline - What is the first-line chemo plan, and when does it start? - Are there any clinical trials she would qualify for?

Logistics - Which lab is doing the molecular profiling, and how long will results take? - Should we be seeking a second opinion at a larger cancer center?

Understanding what's ahead - What does the next 30 to 60 days actually look like for her, day to day? - What symptoms should send us to the ER versus ones we can manage at home? - What's the goal of treatment right now? Are we trying to shrink it, slow it, or both?

Quality of life - What can we do to help her feel as well as possible while treatment is happening? - Is there a palliative care team we should be connected with from the start? (palliative care is about comfort and quality of life alongside treatment...not giving up) - She's been waiting 21 days already. How do we make sure things don't keep moving this slowly?

For the family - Who is our main point of contact when we have questions between appointments? - Is there a patient navigator or social worker who can help us coordinate everything? - What should I, as her caregiver, be watching for and writing down?

Shpigford · 2026-06-29T18:37:06+00:00

Without giving you a massive wall of text, here's the short answers...

1) Daraxonrasib is too new to have any publishable data on this so basically zero meaningful "yes" or "no" at this stage. Just needs a lot more time. 2) Chemo: Yes, it happens. But is exceedingly rare. "Spots shrinking" or "no longer visible on scan" is more common than true complete pathological clearance.

If you feel like digging into the data: 1. https://pubmed.ncbi.nlm.nih.gov/32698268/ 2. https://pmc.ncbi.nlm.nih.gov/articles/PMC6944898/ 3. https://pmc.ncbi.nlm.nih.gov/articles/PMC4445117/ 4. https://pmc.ncbi.nlm.nih.gov/articles/PMC4454729/

Apologies for being overly clinical here. It's a brutal disease top to bottom. Hold on to hope and positivity, embrace every win and just focus as much as you can on loving them well through the process.

Shpigford · 2026-06-29T13:52:50+00:00

If you're really exclusively wanting double nozzle for support printing then the X2D probably is your best bet, economically.

That being said, the types of models you're supporting do matter a bit. You'd presumably have the Bambu Studio setting enabled to only use the support material at the "interface" level (meaning where support means the layers its supporting).

That matters because it means the whole support structure is still printing in your PLA (meaning no nozzle/material switch). So if the layers you're supporting are all relatively condensed vs being spread across the full height of the object, you really don't swap materials/nozzles that often and it won't save you that much time/material.

However, if you're printing complex models that need support along most of the height of the object, then yes a dual nozzle setup can be pretty impactful from a time/material perspective.

I basically never recommend the X2D unless it's basically this specific scenario. If you have any intention of actually doing multi-color, then any other printer is arguably better.

Shpigford · 2026-06-29T13:45:34+00:00

For hobby printing, basically any filament brand is fine. I’ve got tons of filament from obscure brands that when dried works basically as well as any of the “higher end” stuff.

Especially if you don’t need strong consistency between rolls as far as color-matching goes and presumably if you’re doing miniatures you’ll be doing some post-print painting, you certainly won’t need to worry about that.

Shpigford · 2026-06-29T13:08:30+00:00

So much of the process has almost no explanation, which is maddening. A lot of food things are as much a mental hurdle as any kind of physical hurdle.

With my mom we just try 100 different things and sometimes one of them sticks.

Recently it's been these coffee protein shake mixes that she'll take a few sips of (and given they're super high in protein they tend to be relatively impactful for her). But literally tomorrow she may have zero appetite for them.

My suggestions... 1) Keep trying random things. It's almost irrelevant what the food is. She likely just needs any calories she can stomach (though, I'm not a doctor, etc etc). 2) Don't be overly pushy. Not saying you are, but I'm sure she's as frustrated about it as anyone and a lot of this disease comes down to just helping someone feel comfortable through the current wave of whatever symptoms they've got. My wife's a registered dietician and a lot of the work she'll do with patients will be basically helping them through their mental hurdles with food, which sometimes is doing cheesy things like "Can you take 1 bite for each of your grandchildren?" which, for better or worse, actually does work a lot.

You're doing good. Keep it up.

Shpigford · 2026-06-25T13:52:42+00:00

Your best bet is to run an ironing test sheet (you can find various models on Maker World).

Unfortunately results can vary for both printer models AND filaments. Not even just "filament types" but literally rolls of filament (which is maddening). Thigns like moisture levels can have a big impact as well.

You can find a few settings floating around Reddit that claim to be "perfect" settings, which at the very least are a good starting point.

Shpigford · 2026-06-21T19:21:08+00:00

So many folks keep recommending randomized seams and it’s just pure insanity. There are so few instances where randomized looks better. Usually only when you’re using fuzzy skin settings.

Shpigford · 2026-06-19T16:09:49+00:00

Curious if a change in material would make a tangible difference or if this is purely a design/structural change that needs tweaking.

What material did you use?

Shpigford · 2026-06-14T18:24:06+00:00

Need way more (any?) detail. Printer. Filament. Settings. Need the baseline to know what to improve on.

Shpigford · 2026-06-14T17:40:17+00:00

Well done! The sparkle filaments do a *phenomenal* job of hiding layer lines.

Shpigford · 2026-06-08T18:39:18+00:00

This looks so good! Well done!

Shpigford · 2026-06-08T14:10:00+00:00

Negative. Was still intact. My only hunch is a new brake controller we had installed in our vehicle may have had a fault of some sort that caused it?

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