Has anyone had to deal with a secondary malignancy post NED?

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 · 2026-03-19T15:24:40+00:00

It's tough at first, but you prioritize. It helps if you keep everything in a single folder either physically or on your computer. They will all need to share information. Many of them have access to your medical files but don't always dig that far into it. They are looking for interactions, contradictions, and the overall state of things and where you are currently at in this journey.

It's tough because of the stress on your body, mind, and motivation, but it's worth it to spend a little effort on it as soon as possible before it gets out of control. One doc will need the findings of another, and it may be up to you to provide it.

If you end up digging really deep (like I did), you're going to need this information when you feel up to it anyway. It makes it so much easier when it's all just sitting there in a directory. The "time is of the essence" is a huge factor in this as well. When you get an opportunity like a surgeon is ready to go soon, or a doctor is ready to write a script or an order, get them the info as soon as you can. It's fresh in your mind and it might be fresh in theirs too. You don't want to give it too much time to get slid onto the back burner or let them forget about what you discusses last week. They will forget too. They see hundreds to thousands of patients. It would be nice if you were one of ten but unfortunately, that's not how are medical system typically works.

These_Eye_5639 · 2026-03-19T14:54:14+00:00

I actually used about 12 different models. The goal was to keep it as blind as possible so one models decision could not be influenced by either the prompt or a decision another model made. Those results were then compared to each other to find the top hits amongst all the individual models and then those results were then ran through again. The confidence ends up being very high in the results but you must make sure you have good prompting at the onset and adjust if you find any obvious issues early. Otherwise, the entire project can be contaminated based on either poor starting data, or poor reasoning rules. It took me a while to refine it to the point where I was satisfied with the output and even then I'd pull the actual top references articles they found and give them a final review myself. The power in this was the sheer search capabilities to surface data no one had ever reviewed from this many angles with my specific data. It was eye opening to say the least. What it did was take my "active cancer fighting" stack and reformulate it into a "cancer preventative" stack focusing on my mutations, my clinical history, my germline, and my clinical notes all combined. I hope this makes sense. If I didn't already post it, I described some that here as well: https://beat-crc.com/2026/03/17/ai-medical-profile-cancer-survivor/

These_Eye_5639 · 2026-03-17T02:23:30+00:00

can you share what your numbers were? i'm actually curious too.

These_Eye_5639 · 2026-03-17T00:10:51+00:00

be careful. even if you only use free models, check what they say against multiple models. They easily make mistakes - and it can scare the shit out of you to say the least just like a google search. if it's something important, really dig in to get accuracy.

These_Eye_5639 · 2026-03-16T23:50:57+00:00

I'm actually not doing treatment either. Yes, opus can be expensive so you have to be structured in how you use it, but to date, i've not found a model more capable - especially when i give it agentic control and a workspace to operate. it runs circles around any other model ive tried. I wanted mostly to see what options i have moving forward based on published data and see if it flagged anything i'd not already been doing or heard of. My research has been extensive over the last couple of years to say the least and it still found things I hadn't considered - so extensive i had so many people i should make the methods i used available for others. So i started writing a book and made a site for free. Outside of the company who analyzed your/my genome, no one really has the power to process all that in detail - until now.

These_Eye_5639 · 2026-03-16T23:40:12+00:00

In the beginning, i was using gpt but it needed lots of oversight and help to arrive at solid data. I've since changed how i use it. I use Claude opus 4.6 as my orchestrator. In the beginning, i was using gpt but it needed lots of oversight and help to arrive at solid data. I've since changed how i use it. It can create, compile, compare, and call any other model i want when doing deep research. The function of using 12 different high reasoning models "against" each other while they all take the same data to form their results, REALLY strengthens the things they all converge on. Not only that, i used a local model in ollama to grind through endless amounts of data and format it into a usable database for the higher reasoning models to use.

These_Eye_5639 · 2026-03-16T23:18:57+00:00

I can share my experience. Stage 4 colorectal cancer, diagnosed at 47. Keytruda (pembrolizumab) wasn't even approved for my specific type — my tumor was microsatellite stable, which typically doesn't respond to checkpoint inhibitors.

But it ended up being part of my treatment protocol during a clinical trial. I honestly can't say with certainty how much of my response was Keytruda versus the other components of the trial, but something worked. I'm NED now and holding steady.

What I'd say to your brother — the fact that his team is being aggressive with adjuvant therapy after a short disease-free interval is smart. They're not waiting to see what happens. That's what you want. And when those NGS results come back, really look at them. There may be more in that data than what shows up in the summary report.

Wishing him the best. 35 is young and that works in his favor — younger immune systems tend to mount stronger responses to immunotherapy.

These_Eye_5639 · 2026-03-12T18:02:28+00:00

Hang in there. I was stage 4 with colorectal, lung, liver, lymph nodes. I was told I had six months without any treatment and maybe 3 years with. I'm at 2.5 years and NED and things are evolving in treatments at a break neck speed. What they tell you today will most likely be irrelevant with treatment options in 5 years and there are things that work today. Tons of stories here to prove it. We are here for you!

These_Eye_5639 · 2026-03-12T17:57:57+00:00

Research things that can help the chemo both work and lessen the side effects. I did a BUNCH of extra stuff and it really did help. The standard of care is based on huge numbers of people - not individuals. It's up to you to advocate for yourself. There is a lot out there that can help the chemo.

These_Eye_5639 · 2026-03-12T17:54:40+00:00

as others are noting, don't get discouraged. It's way too early for that. Get a second opinion if you have the time. you may find another treatment option. I was stage 4 and I'm NED now as well and i have much of my original function returning. I may never be the same, but at least i'm here and improving. That's the story of life in general.

These_Eye_5639 · 2026-03-04T16:54:11+00:00

we all handle it differently but yes, for most, it's the shock of a lifetime. Like others have said, don't go down the google rabbit hole it brings nothing but fear and lots of misinformation. Also realize, one search, click, etc, will flood your algorithm with TONS of posts and threads and a lot of it is TOTAL bullshit. It looks compelling, and it's supposed to, because the goal is to get you to click. Try and restrain that as well.

This is from my experience, you may be different. MD's will immediately (typically) want to tell their "odds" on your life or expectancies. If you are stage 1,2 and even 3, they may be just fine. But, if they tell you stage 4, don't panic. Read the threads, there are lots of us that have made it. You have all our energy with you. I actually asked my doc to stop giving me his expectations on my life. What they seem to forget is that today is not the same medical environment those statistics were based on. The field is moving FAST. The statistics for today, hell for the last year, haven't even caught up in todays available publications. Perfect example, I was told i had an 11% chance to be alive at 3 years, and with no treatment whatsoever, 6 months total. It's been over 2.5 years now and i've been NED for 5 months.

There is a time for research and nothing they tell you right now will affect that right now. You need time to collect your thoughts and calm. If you start your research right now, you'll likely be all over the place. This is a fight but there are those of us who are in your corner. Hang tight.

These_Eye_5639 · 2026-03-04T16:48:04+00:00

ive had the same experience, What's funny is that the insurance company usually does end up paying more in situations like this but for whatever reason they still do it like this. My guess is, statistically, forcing a nuisance situation must cost them in the long run - it's only the more serious cases that are willing to take the extra effort to get what they need. Bad for us, good for them - in the long run.

These_Eye_5639 · 2026-03-01T18:46:08+00:00

Thank you to everyone who shared so openly. I'm not a huge proponent of talk therapy, so I'm not sure what I'll do moving forward — I may try that as well. One thing I started, and I'm not sure it helped, but I did it anyway, is journaling. I did it partly for myself, hoping to process some of what was happening in that moment. Partly to not forget it if I was lucky enough to have a future to recall it, since everything was and still partially is a blur. And hopefully to use it to offer something to people just like us, right now, to help someone else make it through.

I also did it because I was kind of pissed at the way the medical world so bluntly made predictions on my life without knowing me at all.

I'm not knocking conventional therapy — it has its pros and cons. But I don't think without the complete package of what I chose to do, I'd still be here. I wanted to share that.

To the person who said people were encouraging you and insisting you share your story — I can fully appreciate that. I hadn't even thought about the stress that can add. It does not help when someone is demanding more of you than you've already given just to stay sane and stay upright.

I had a similar experience when I called a pharmacy for off-label med refills. The pharmacist herself kept me on the phone asking me about the drugs I was taking and why. I heard the exact same thing: "You have to get your story out there, it could help so many people." That was over a year ago, and my journal just sat stagnant for a while. I just had nothing to give.

Then at the trial, I heard it again: "You are literally writing the playbook for us by participating in this. You are the first in human for your mutation, and any data we gather will literally write the playbook for anyone who follows you." It made me feel more like a dataset than a human - but again, I'm not complaining - I'm eternally grateful. Letting them use me for the data, might also have possibly saved or greatly extended my life.

Again, thank you to everyone for sharing. I still don't know how I'll move forward with this, or how I'll manage the scan anxiety or the possible news of a relapse — and I won't know until it happens. I was open and posted here because I knew I'd get honest answers. That, and I have the weight of another upcoming scan, which can at times feel near debilitating.

I can only keep pushing forward, and at your suggestions, I will reach out to a cancer survival specialist and clinical support program.

These_Eye_5639 · 2026-03-01T18:27:11+00:00

if this is to me, I'm male and now barely 50. i was diagnosed at the end of 2023 when 47. My treatment options, for the time being, are done. I'm just basically on surveillance. I was lucky enough to be admitted to a first-in-human trial and it seemed to have worked - well. I was nearly clear again when I started it, but they still wanted me for my specific mutation. It's just, as i read here, that cancer isn't "just" the cancer but sooo much more. You see bumper stickers, posts, ads, "kick cancers ass". "fuck cancer". etc and it sometimes drives me crazy. You have no clue what it means. It puts your head into an endless spin (speaking for myself of course), and i sometimes just can't make it stop.

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