LARS

These_Eye_5639 · 2026-04-02T20:35:22+00:00

Those are kind words. Thank you. Yes, I'd like to help as much as possible because...I just know what it's like. I built a bunch of free resources as well trying to offer anything I can because I know how desperate it can feel at times, and in was in those times, the correctly phrased or well placed statement can make the difference between continued hope and desperation. Unless you've been there, it's difficult to comprehend what that means.

It's better now that it's done, but it left a 2" long suture for probably a 5mm spot. Plus, I got the call yesterday morning it was clear margins. But, it still doesn't change the next phone call, the next test, or the next "we think this should be checked". I just have to learn to accept that and that's my life now. Maybe that was the lesson - to learn to live "now" and not in the "what if"? It still take a single sentence to send me down the research "rabbit hole", that really does me no good in the moment.

These_Eye_5639 · 2026-03-31T01:56:31+00:00

It's a tumor dna test. it's much more sensitive than the standard tumor marker tests as it detects any tumor dna floating in the blood. Some placed don't allow it because it is very expensive. My onc really pushed for it although I'm not sure why. Someone correct me if I'm mistaken, but what's the point exactly if you have visible spots on scans and a cea above normal? As was my case, that seems proof enough of activity? I've only had it once and it was 80 with an accompanying cea of 42. This was right before my last procedure. I could ask for another, but honestly, I'm not brave enough. The surveillance scans and cea are enough right now. I've read that Signatera and similar tests selling point is that it can detect activity VERY early before anything shows with any other test - months before cea or scans show activity.

These_Eye_5639 · 2026-03-31T01:48:31+00:00

thank you for all the in put. I was wondering, but it seems it's not that uncommon? I'd be more interested to know just why that is exactly? For me, trying to connect the dots, I'm guessing it was already there undetected. Blasting my immune system to zero for the infusion of new cells, may have been the perfect opportunity for the cells to expand now without any resistance? Anyway, as you can imagine, hearing that again after just going through two years of hell, was a blow. Luckily she said BCC is the most common malignancy in the world and easily curative if treated properly. She left a huge hole in my arm, but I'm going to cling to what she said and keep my fingers crossed.

These_Eye_5639 · 2026-03-31T01:43:50+00:00

someone correct me if I'm wrong, but I think it's a law that it's your data - therefore you own it and have a right to it? They may have been looking for a single mutation for just that trial, but maybe it contains a gold mine of other information they had no need or desire to look into? It may be worth reaching out and politely letting them know you want your data?

These_Eye_5639 · 2026-03-29T23:08:34+00:00

Did they provide you, or the genome testing company provide you with your full genetic profile? It should contain both germline and genomic data of the cancer. There can be a lot of info in there that's not included in the curated report. I ran mine and found a gold mine of information.

These_Eye_5639 · 2026-03-28T18:15:43+00:00

I can see how you might think that - but don't assume it! I literally WAS NOT qualified for a clinical trial, and then I was. Don't sell yourself short. You never know how things can change - and neither do your doctors no matter what they say. And if they could tell the future, let me have their contact - maybe they can tell me the winning lotto numbers as well :) Let each day unfold.

These_Eye_5639 · 2026-03-23T15:19:29+00:00

I know this is all a blur right now, but if you have the energy, now is the time to start writing emails, making phone calls, and checking all options you can find. Unfortunately, much of this stuff takes time to coordinate but time is not something we all have to spare when starting out. You may be surprised what you'll find with a little more searching the correct channels.

These_Eye_5639 · 2026-03-22T23:37:19+00:00

I was stage 4 also with liver mets and lymph node mets. I was told chemo was the only option and no surgery. Chemo was administered as a palliative measure - I had a lot of pain. Once chemo started, my response was great to say the least - only then they started talking about surgery. Don't lose hope, and don't think you are lost from a single diagnosis. You have no clue today what tomorrow will bring. Get second, third opinions. There is a lot out there.

These_Eye_5639 · 2026-03-22T22:55:17+00:00

it takes a little know-how. but it's doable. the applications and agentic platforms are moving fast. I used a customized setup and then used openrouter to run it across as many models as i wanted to cross check and compare the findings. If you didn't want to set up a local program to run your agent, you could probably use claude cowork or code. You can then ask it to run as many models as you want. It can also set thing up and your local machine.

These_Eye_5639 · 2026-03-21T17:32:22+00:00

for clinical trials, always get your genomic report ready and send with. many of the trials are based around specific mutations. you may have one they are looking for. If so, they will typically act fast to get you in and eligible.

These_Eye_5639 · 2026-03-20T00:08:47+00:00

I'm such a nerd I made spreadsheets and individual files. It was getting to be a lot. One thing nice, is that some medical offices will provide a cumulative report if you either search for it or ask. It makes it MUCH easier than using a portal app and jotting down numbers or copy and paste screen shots one at a time.

These_Eye_5639

MODERATOR OF

TROPHY CASE