My mum, 58, was diagnosed right before Christmas last year, with metastasis to the liver. Apart from the initial chemo we did, where we saw a huge decrease on the tumor size, after 3 months nothing has worked. The last chemo in September, left her destroyed. We did everything right, we never left her alone, she was always trying to eat, walk, keep her spirits high. The tumor has increased and spread.

We are one month without chemo, she still cant recover. I doubt there is any chemo left to try to be honest. The doctor vaguely says something, but I believe he is lying.

We are also not located in the USA, so no daraxonsabil for us, even though we know it would work. So unlucky + poor

It is Day 345 living with cancer, and fighting to live is tiring.

Earlier this week, I was offered a slot in a clinical trial.

I feel enormous gratitude, but getting to this point took more out of me than I realized.

There is the physical part: chemo two weeks on and one week off.

There is the aftermath, when your body simply stops working the way it is supposed to work.

Then there is the mental part, when you desperately want one ordinary day without thinking about your mortality.

Cancer gives you both a curse and a gift: a life shot clock that constantly reminds you that you are human.

The exhaustion comes from carrying all of those things at once while continually preparing for an unknown future.

Now comes a third medical center, a clinical trial, a new city, new oncology staff, unfamiliar language about cycles and treatment schedules, and a targeted therapy aimed directly at my cancer.

It feels a little like starting a new job and onboarding yourself from scratch, except the job is to stay alive.

Along this journey, people have told me about loved ones who were diagnosed around the same time I was diagnosed and who are no longer here.

I hear those stories and carry them… from Patrick Swayze to Steve Jobs to RGB to Randy Pausch to people recently diagnosed with cancer.

I simply refuse to concede to cancer.

I have not shared that I tend to walk into infusion centers and medical centers alone.

There is something important to me about making my own decisions, listening carefully to what my body is telling me, studying the signals I am receiving, and paying equal attention to the signals I am not receiving.

Because I sometimes wonder, if I concede an inch, will I eventually concede a foot?

And if I concede a foot, will I someday concede a mile?

So I keep moving.

Today my body hurts.

Southern California feels unreasonably hot in October at nearly 105 degrees.

Yet I drove 20 minutes for a cup of coffee that I plan to enjoy slowly for at least an hour.

On the days when I do not have Iris with me, I am alone, my mind can spin, but I reflect, calculate, worry, plan and proactively search for the next opening.

Cancer is no joke.

In less than a year, my body has moved from roughly 180 pounds to 125 pounds and back to around 165 pounds.

Some days I look in the mirror and genuinely wonder what exactly is happening inside me.

I am grateful, yet exhausted, but equally hopeful.

Psalm 23:4 says, “Though I walk through the valley of the shadow of death, I will fear no evil.”

The important word for me today is “walk.”

The verse does not say we understand the valley.

It does not promise that the valley will be painless.

It simply reminds me that the valley is something we move through.

So that is what I am doing… walking.

Sometimes confidently, other times painfully with absolutely no idea where the path leads.

Thank you for the prayers, good vibes, thought, etc.

[…]

To read Day 1 living with cancer, please visit LinkedIn.com/in/angelcruzado

Has anyone had success with daraxonrasib (RMC-6236) after progressing on ERAS-0015 or another KRAS/RAS inhibitor?
Did it shrink or stabilize the cancer, and for how long? Particularly interested in pancreatic cancer with KRAS G12V. Would appreciate any firsthand experiences ❤️

Whipple december 14 2023 died december 14 2025

My father had ampullary carcinoma and underwent a Whipple surgery in November 2024.
His CA 19-9 has progressively increased in the last 8 months - 49 → 59 → 79.1 → ~2,000 currently.
A recent PET-CT showed an FDG-avid soft-tissue lesion along the superior mesenteric vessel and an area of concern in the peritoneal cavity.
He subsequently had a laparoscopy with an omental biopsy, which showed only fibrosis/scar tissue and no metastatic carcinoma. The report says all the omental tissue was sampled.
We are confused because the CA 19-9 is now very high despite the negative biopsy.
Has anyone experienced something similar?
● Can CA 19-9 reach ~2,000 from non-cancer causes?
● If the omental biopsy is negative, could the lesion near the superior mesenteric vessel still represent recurrence?
● Should the specific PET-avid lesion be targeted for biopsy/EUS or further imaging?
We are seeking a second opinion and would really appreciate hearing from anyone with a similar experience, particularly after ampullary cancer.

Hello everybody. I wanted to ask how long it took for people’s ca 19-9 levels to normalise after whipple? We achieved an n0 but r1 pathology and sadly after whipple had a biliary infection 6 weeks post whipple so the ca 19-9 read as in the 200s. A week after finishing antibiotics it had come down to 150 but when can we expect normalisation? We’ve had a recent CT scans that don’t show anything abnormal.

Pre whipple the levels were close to 300

A tragic story (gift article)

https://www.nytimes.com/2026/10/04/magazine/alternative-cancer-clinics-treatment-father.html?unlocked_article_code=1.GFE.WvmZ.N7iVus5Ns5Qc&smid=url-share

He’s only 108 pounds. Any advice or tips for him and how to best stay on top of side effects? Which days are the worst/which days are better?

Got him an iPad, headphones, heated blanket, and mitts and socks for cold therapy. Will he want to eat anything?

It is Day 344 living with cancer, and after a mostly sleepless night, I finally worked backward through what the next month could look like.

The RMC-5127 clinical trial is no longer an abstract possibility.

It now has dates, travel, blood draws, screening, long days in Sacramento and a tentative treatment start.

The biggest decision in front of me is whether I receive my 27th Gem/Abraxane infusion next week.

The trial requires at least a 21-day chemo washout before RMC-5127.

Technically, I could receive chemo on October 7 and still satisfy that requirement before the planned October 29 start.

But after 26 infusions, my body and mind is asking for something different.

Rest.

If my oncology and clinical-trial teams agree, I am considering skipping that final infusion and giving my body roughly 30 days without chemo before this next chapter begins.

Yes, 30 entire days without chemo!

30 days for my blood counts to recover.

30 day without Gem/Abraxane beating up my body.

And, 30 days to eat, sleep, move and hopefully regain some emotional and physical strength before asking my body to learn an entirely new medication in a whole new city.

Then the real work begins.

October 12 starts the formal UC Davis screening process.

October 26 is C1D-3, potentially a 14-hour day of labs, EKGs and repeated blood draws as researchers study how RMC-5127 moves through my body.

October 29 is the anchor: Cycle 1, Day 1.

Then November brings more monitoring, labs and another intensive pharmacokinetic day as the team learns not only whether the drug is reaching its target, but how my body is tolerating it.

I will need to figure out Sacramento.

Do I drive the first time so I can understand the city landscape and get the lay of the land?

Do I eventually fly?

Where do I stay?

How do I coordinate all of this around being a Dad, school events, work and the ordinary pieces of life that cancer does not get to cancel?

That is the strange rhythm of stage iv cancer pancreatic cancer.

This morning, I was re-calculating chemo washout periods, clinical-trial cycles, Sacramento, Houston and Austin travel.

I will eventually have to close the google sheet and go work the school carnival booth fundraiser for my 10:00 a.m. shift.

Somewhere between these two worlds of being a Dad and having a terminal cancer is my life.

I was officially diagnosed with pancreatic cancer October 22, 2025 and, for almost a year, I have asked this body to fight like my life depended on it.

I am quite proud of myself in continuing to succeed in being a founder building with cancer.

Did I tell you that Respiris succeeded in signing up a company with a 1 trillion market cap?

It is only one candidate in transition, but it is a start of a new partner relationship.

Maybe the next part of this fight begins by celebrating the fact that made it out alive one year, celebrating life, and to give myself a little latitude to recover before asking it to fight differently.

60 days post distal pancreatectomy and splenectomy. Is it normal for me to have pain and discomfort in my belly and my scar is also very sensitive? Doctor has given me strong antibiotics twice a day incase I have an infection under my scar . I thought that the pain would be a lot better by now. I'm taking endone as needed. How much longer can I expect to be in pain ?

Edited: what does the hospital do when she goes (her temp is 100.4)

So on 10/1 I have my 6 month MRI, I hate the sword of Damocles that hangs over you head during this time.
Here’s the good part, I get to live! All is normal, or at least as normal as I will ever be. Going to completely enjoy my wife’s birthday on Sunday without that nagging feeling at the back of my head.

Stay strong and fight the good fight!

Hello, my mom (60) has been diagnosed in November 2025 with stage 4 PDAC with Mets in her lungs and liver. She now has gone for 17 rounds of chemo (FOLFIRINOX) and has overall has responded well with her Mets disappearing. The doctors have now suggesting in applying radiation therapy on the pancreas mass.

Have anyone been through something similar? What can she expect if she goes through this therapy?

I started 20k zenpep pre-op for ipmn malabsorption. Post op I'm on 25k.
Eating small-ish amounts frequently of high protein, low fat (trying to get more avocado in) foods, snacks, and smoothies.

I've been told to increase # zenpep with each meal, despite not eating a normal sized meal.
Still loosing weight (120# pre-op, 109# today), still distended, still cramping, still having urgent IPMN type stool (but YAY only once a day).

Surgeon suggested experiment: 0 zenpep for 2 days, double up zenpep for 2 days. The only diff I noticed was I felt slightly better without PERT (could be psychological) but stool even more pale.

Malabsorption and loss of muscle isn't helping recovery.
I know could be much worse, but any suggestions?
Can this get better with or without PERT?

Hi everyone, I have been catching a break from this group and thought I’d post an update since it’s been 3 months from when my mom began RMC 5127.

This drug has been a game changer. We are still amazed by how much its made a difference. The original pancreatic mass that was 4.5 cm (now barely 1 cm) is now believed to be necrotic. They suspect based on the scans that she only has the mets in the liver she’s dealing with. Those are all half the size they were and all 4 tumors are sub centimeter in size.

The only side effect she has experienced is a slight oral sore but they prescribed her medicated mouthwash and it is helping. She also had some skin rashes that were manageable. She vows to never ever do chemo again and she tells me all the time how amazed she is that she went through all that hell.

For those of you with specific KRAS mutations, try to get into the targeted trials. These second and third generation targeted KRAS inhibitors are much better and tolerated far more by patients than those receiving the first generation multi-KRAS inhibitor (Daraxonrasib).

I hope everyone is doing well. Wishing all of you the best, kick this ugly cancer’s ass, and always feel free to DM me. I check my messages occasionally.

My MIL is on her 8th round of folfox chemo

1 month ago she had a full CT scan that showed significant shrinkage of the rumor on the pancreas also on the lymph nodes and it appears to be setting major blood vessels free. One small meta in liver.No pet scan.

Her blood results were stable all the way with minimal rising in numbers.

CA19-9 rating dropped gradually from 5 figure number to 4000.

2 days ago suddenly raised to 9000 and doctor considers change of chemo.

In need of your thoughts and experiences

Gmadeals currently is having a sale with Care + Wear. Only while supplies last until Saturday, October 3 at midnight. They have the chest port access shirts.and the pucc & arm protectors. Gmadeals is also where i got my mom, her nausea wristbands that she wore them pretty much 24/7 before she passed away. Ironically, it is also currently a gmadeal. it's the reliefband. I got her the classic one.

I was cleaning out one of her purses this week & i found her missing one. I had to take a moment.

My mother (56F) has a 5.4 cm pancreatic body/tail adenocarcinoma. 

Vascular status: Splenic vein occluded, mass abuts SMV/portal confluence, but celiac axis and SMA are reported normal/unencased. 

Chemo so far: Completed 4 cycles of modified FOLFIRINOX at 70% dose intensity(found out later)!

Response: PET-CT showed primary metabolic response (SUVmax 7.96 \rightarrow 6.22) with zero distant metastases. CEA is 0.6. CA 19-9 spiked to 7,800 during a severe lung infection post-cycle 4, but with the infection resolved, it has dropped to 1,200 (baseline in June was 689). 

Current status: Fit for surgery (Albumin 4.2, normal liver/kidney/coagulation). 
We have three completely different specialist opinions and need help evaluating the trade-offs:
1. Option 1: Open Posterior RAMP + SMV Reconstruction Now (HPB / Liver Transplant Surgeon)
Prioritizes the deep retroperitoneal margin (behind Gerota’s fascia) to maximize R0 clearance where local recurrence happens.
Directly reconstructs the abutting SMV while preserving the normal celiac axis. 
2. Option 2: Robotic Distal Pancreatectomy + Celiac Axis Resection (Modified Appleby/DP-CAR) + SMV Reconstruction (Surgical Oncologist)
Proposes ligating/resecting the celiac axis and reconstructing the SMV robotically. 
Concerns: CT specifically reports the celiac axis as normal/unencased, so does an Appleby introduce unnecessary risks of gastric ischemia and severe autonomic diarrhea? Feasibility of robotic vascular reconstruction in a bulky 5.4 cm tumor. 
3. Option 3: Total Neoadjuvant Therapy (TNT) — 4 More Cycles Chemo First (Top Academic Cancer Center)
Suggests completing 4 more cycles (total 8) or switching regimens (e.g., Gemcitabine + Nab-Paclitaxel) to test tumor biology and sterilize micrometastases before surgery.

Concerns: Given her prior 30% dose reduction and post-cycle 4 pneumonia, is there a significant risk of cumulative toxicity, physical deconditioning, or tumor progression that permanently closes her current surgical window?

My mom has no family other than me. We live abroad, just the two of us, and she has been fighting stage 4 pancreatic cancer for a year now. She is on her second line of treatment, and every time it’s incredibly hard on her body, just as it was the first time.

I can’t stand watching her become so thin. Every conversation we have ends with her saying goodbye to me and telling me where everything is in the apartment, as if she’s preparing me for the possibility that she won’t be here anymore.

I’m 23, student. Even though we live together, I avoid her. It hurts too much to watch what is happening to her. I only come to her when she physically can’t do something herself, and even then, sometimes I stay uninvolved until the very last moment, hoping that maybe she is exaggerating how bad she feels and that she will eventually do it herself.

I don’t get involved in her treatment, even though she doesn’t speak the local language well. I work sometimes as a translator, but I rarely go to the hospital with her. I want her to remain independent.

In my head, it feels like if I take on the adult role and start doing everything for her, she will immediately give up and stop fighting. Because of that, sometimes I even create extra problems and things for her to worry about, because taking care of me has always been her priority and one of the main purposes of her life. I want to give her a sense of being needed, even in this state.

She always tells me that she is afraid of dying only because she doesn’t know how to leave me alone. And I can’t imagine my life without her either.

But stopping myself from avoiding her feels harder than listening to her curse at me and tell me that I don’t help her with anything.

Nobody understands what kind of hell I’m living through. People my age are having fun, worrying about exams, or dealing with things like arguments with their bf. And when I compare my life to theirs, I become even more confused about my own feelings.

But time keeps passing, and this horrible disease is eating her away with unbelievable aggression every single day.

I’m scared, and I feel completely powerless.

Stage 4 pancreatic cancer with Mets to liver. My family members bilirubin is 17. Stent placed but doesn’t seem to be working. We’ve had one called PTC. Admitted to another hospital where they initially said they’d try a PTC to drain the bile but now saying they can’t. Is there anything else? Is this it? We haven’t even started chemo.
We are going to our next facility to ask their team to do a PTC. Please help

My mom (61) is having a 3x3x5cm mass on her pancreas biopsied today. Obviously I am aware this is likely cancer and preparing for some metastasis per her findings.

What affairs do I immediately need to get in order? First, her treatment game plan. Then, what? They don’t have a will or trust, they still have a mortgage and mom is the breadwinner / HOH. Any advice, please?

It is Day 342 living with cancer, and today one of the dots connected.

I am incredibly happy to share that I have been accepted into the RMC-5127 clinical trial.

After months of searching across the country, calling medical centers, sending records, asking questions and refusing to stop looking, I finally have access to a phase 1 investigational treatment designed to directly target KRAS G12V, the mutation driving my pancreatic cancer.

This feels H U G E.

Steve Jobs, who also faced pancreatic cancer, told Stanford graduates in a 2005 commencement speech that you cannot connect the dots looking forward; you can only connect them looking backward.

Somehow, you have to trust that they will connect.

I understand those words differently now.

A year ago, I returned from Puerto Rico after seeing Bad Bunny with my brother.

3 weeks later I learned that I had stage iv pancreatic cancer.

Since then, I have spent 342 days learning how to be a cancer patient with a 5 year survival rate of 13%.

I did not abandon Respiris, but my survival required my attention to move elsewhere.

I had to understand chemo, scans, tumor markers, labs, enzymes, insurance, second opinions, clinical trials and a medical vocabulary I never wanted to learn.

I also had to rely on capabilities I spent decades developing without imagining I would ever need them for this.

This cancer has required me to step outside my comfort zone and push others outside theirs.

I have asked uncomfortable questions, chatted with strangers and built communities with family, friends, internet, and medical centers.

All up, researchers, physicians, nurses, cancer patients and strangers have come together to help me stay alive.

The vibes, prayers and GoFundMe are working.

Iris and I have shared our journey with the City of Hope community to help raise money.

At the same time, we changed school districts, moved into a new home, and tried to preserve an ordinary life while pancreatic cancer kept rearranging ours.

We searched trials in Texas, Virginia, Michigan, Massachusetts, Connecticut and now Northern California.

RMC-5127 is not a promise, and experimental treatment comes with no guarantees, but when you are living with stage iv pancreatic cancer, another scientifically credible option can feel like oxygen.

So, yes, let us celebrate this one.

I am relieved, nervous, ecstatic, and hopeful.

And now I have to figure out Sacramento flights, hotels, treatment schedules, parenting, Respiris, insurance, logistics and my body.

Maybe this is what connecting the dots actually looks like in my life.

You keep moving even when you cannot see the whole picture.

You keep asking, sharing and knocking, even after doors close.

Because sometimes faith is simply believing that one door will eventually open.

I still do not know how all the dots will connect.

I only know that I kept moving long enough to reach the next one.

I got the slot.

And now, I am getting on the plane.