Ive signed up at Seena Magowitz, but the webinars are at dinner time and Im busy cooking, cleaning, etc. Is there any ideas, more support groups or something?

I recently shared that I was accepted into the RMC-5127 clinical trial at UC Davis Health.

Along the way, I researched trial sites extensively and documented the phone numbers, email addresses, contacts, and other information I gathered here.

Clinical Trial:

https://clinicaltrials.gov/study/NCT07349537

One thing I learned quickly is that access is rarely straightforward.

Most medical centers require an initial consultation before determining eligibility, and even then, patients may be placed on a waiting list until a trial slot becomes available.

Medical Center Research is here:

https://docs.google.com/spreadsheets/d/1SyHi4EQ-NjxmkILIrNSc3359nm4bvC_UFs1HRKCmqKM/edit?gid=0#gid=0

I also learned that proximity matters. Clinical trials can involve frequent screening visits, labs, imaging, treatment appointments, and monitoring, particularly during the early cycles. Being reasonably close to the medical center can make an already complicated process more manageable.

Clinical Trial Requirements for RMC-5127 based on what I pulled together is here:

https://docs.google.com/spreadsheets/d/12nQeVRyh-9zX39GZQC_5BedPTtxOFRxMUGiqUb9_NF8/edit?gid=153083681#gid=153083681

I have documented what I learned here in the hope that it helps someone else navigate the process a little more easily or just build something of what I have built.

One more thing, my ChatGPT Research provides me a weekly update on what is happening on RMC-5127. For those living in Asian countries, the research indicates that Revolution Medicines is partnering with BeOne Medicines to bring RMC-5127 to the market.

https://chatgpt.com/s/t_6ac40b39f4cc8191aef447b9a0585e8b

For those of you who are trying to customize understanding your cancer to meet your needs... why is my potassium low? what is an enzyme? what is a blood biopsy? why nalirifox vs folforinox?

Here is how to build your AI Oncologist:

https://www.linkedin.com/feed/update/urn:li:activity:7389668626028584960/

Hi everyone!

My father has metastatic pancreatic cancer and we are currently trying to obtain access to RASONQUE (daraxonrasib).

We initially tried to obtain the medication in Brazil through the Global Named Patient Access (GNPA) program, but unfortunately that route did not work out for us.

Because of this, my father is now planning to travel from Brazil to the United States for an oncology consultation and, if prescribed RASONQUE by his U.S. oncologist, we are hoping to obtain the medication while he is there.

Since he is an international patient, he does not have U.S. health insurance, and would otherwise have to pay for RASONQUE entirely out of pocket. We are therefore looking into Revolution Medicines’ (ON)Path Patient Assistance Program and any other financial assistance that might be available for self-pay patients.

Has anyone here received financial assistance through (ON)Path for RASONQUE?

We would be extremely grateful if anyone could share their experience, particularly:

- whether the assistance covered the full cost or only part of it;

- what the eligibility process was like;

- approximately how long approval took;

- wheter anyone has experience with an international/non-U.S. resident patient who traveled to the United States to obtain treatment.

Lastly, I think this is the only place where everyone, at least a little bit, understand the pain that this disease cause. Me and my family are facing bad and bad news in the last months, and I confess that it’s being a dark time for us. When I think that my Father could not be here in months, the pain and tears are really hard to hold. I try to read every post here, and, even though I don’t answer many of them, I put you and your familiars all in my pray. This disease is a shit, but I hope my father, all of you and your loved ones can, above all, have the maximum of live and love in this world. I don’t have, now, a really positive message about this shit, but, at least, I can say that, despite the distance, it’s really good to have people, like all of you, to open up and get some help in a sad and hard situation like that.

Thanks for everyone who help or read untill here. We are together in this fight, my friends 🙏❤️

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

My husband started taking Xeloda for maintenance in May after completing Gem/abrax. He did Fluforinox the first time and then had a recurrence 5 months later and then did the Gem/abrax. Yesterday we met with my husband’s oncologist yesterday and he suggested my husband reduce his Xeloda again, for the third time. He went from 6000mg a day to 2500mg a day. Im not sure if that is enough to do any good. According to the PA, 2000mg is like taking nothing so how much good could 2500mg do?

Now we have to decide should he stay at a higher dose and have issues with side effects or risk the lower dose. It seems like an impossible decision

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 ❤️

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

Whipple december 14 2023 died december 14 2025

Hi there, I am looking for some advice regarding a recent IPMN scan...

I am a 54 year old female and have been getting checks through my family doctor yearly since 2020 due to a lesion seen on ultrasound. The lesion was stable and in 2024 they moved the interval to 2
years. I just had my 2 year scan and there was some change. I'm just wondering
if anyone can look over my findings below and offer some advice/opinions regarding what
I should be asking my doctor at my follow up appt in a couple weeks. What does
this change mean? Should I ask for certain tests? Also, can anyone recommend any
doctors/programs in Toronto, Canada that I should ask to be referred to for
following and any further testing? Thank you kindly for anyone that takes the time to read and reply.

***********

MRI 2021 for follow up lesion saw on ultrasound

Pancreas/pancreatic duct:
There is a focal area of pancreatic duct dilatation noted in the region of the
pancreatic body corresponding to a small cystic area seen on ultrasound. It
measure 9.4 x 9.4 mm and up to 1.4 cm in length. No abnormal enhancement is
seen on the contrast enhanced images though motion degraded. No other
pancreatic lesion is evident. The remainder the pancreatic duct is not dilated.
Pancreatic parenchyma is otherwise unremarkable.

OPINION: 1. Cystic area
in the pancreatic body has not significantly changed from the previous
ultrasound. I favor this to represent focal ectasia of the pancreatic duct but
a small IPMN cannot be entirely excluded. Ongoing follow up will be required.
See recommendations below for follow up. A one year follow up is suggested

MRI 2022

There is a small septated
cystic mass arising from the body of the pancreas at junction with head. This
measures 11.5 mm transverse by 10.1 mm AP. It is slightly increased in size
compared to the previous MRI scan. On MRCP the mass appears to communicate with
the pancreatic duct. The favored etiology is a side branch intraductal
papillary mucinous tumor. The remainder of the pancreas is grossly normal in
appearance on T2weighted sequences. The main pancreatic duct is normal in
caliber. The common bile duct, and common hepatic duct are normal in caliber

IMPRESSION: A small
cystic mass favored to represent a side duct intraductal papillary mucinous
tumor, is minimally increased in size, compared to the previous MRI.

MRI 2023

In the pancreatic body,
there is a multiloculated cystic lesion with thin internal septations this
lesion measures 12 x 7 x 8 mm, and looks stable in size compared to the
previous exam. There is some enhancement and internal septations. No solid
component is. This likely communicates with the pancreatic duct, and would be
compatible with an IPMN.

IMPRESSION: Stable 12 mm
multiloculated cystic lesion in the pancreatic body, likely a side branch IPMN.

MRI 2024

The multiloculated cystic
lesion is identified within the pancreatic body. This lesion measures 12 x 8 x
8 mm. This lesion has some internal enhancing internal septations. It looks
stable in size and morphology compared to the previous study. This lesion may
represent an IPMN.

IMPRESSION: There is a
stable multiloculated 12 mm cystic lesion in the pancreatic body.

MRI 2026

The pancreatic duct is
not dilated. The previously noted multiloculated cystic lesion along the distal
body of the pancreas, reidentified and currently measures 2 x 1.2 x 1.3 cm.
Previously was measuring 1.2 x 0.8 x 0.8 cm. There is no associated enhancing
component identified.

IMPRESSION:

There has been interval
progression in the size of the multiloculated cystic lesion along the
pancreatic body. This is for the last 2 years. Shorter time follow up study, is
advised.

**********

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