hi guys, appendix cancer was found during urgent appendix removal and then right colon was removed after 5 weeks. today went to see patholoy, it is PT4a N0M0.
looks like it is high risk due to cancer invaded to end of colon. anyone similar with this and need chemo? waiting for oncologist now. nervous. thank you take care everyone
Bonjour,
J'ai une coloscopie dans 1 semaine et je voudrais savoir votre avis.
J'ai eu des premiers symptômes de constipation et douleur en bas à droite (comme une pointe de côte mais plus bas) après des gros repas. Petit à petit, la douleur devenait de plus en plus fréquentes après les repas et les constipation duraient très longtemps.
Aussi j'ai eu cette douleur la nuit 3/4 fois qui ne passaient pas tant que je ne tendais pas mes jambes (car je dors en position fœtal).
Après ça, j'ai eu une grosse période de diarrhée et toujours quelques douleurs parfois après les repas toujours au côté droit.
J'ai réalisé une IRM qui n'a rien vu et une prise de sang qui a indiqué que mes globules rouges étaient un peu trop haut.
Il y'a eu plusieurs cancer du colon dans ma famille et j'ai 22 ans j'ai peur d'être malheureusement atteinte.
Je crois avoir vu du sang dans mes selles 2 fois.
In late December after having a colonoscopy and a battery of CT MRI scans. It was clear that I had over 35 lesions in my liver. I'm based out of Ottawa and the Ottawa Cancer clinic gave me roughly 2 years to live. I'm 48, Married with three kids. It was devastating to say the least.
If you check my profile, you'll see that I'm an engineer that designs lots of cool stuff. So that's the hat I put on when I got this news. I told myself the number One thing I need to do is understand what I have and try to get as much information as possible. I also researched lots of different supplements but I don't want to talk about those because I don't think they had a large effect on my outcome. But if you're interested in the stuff I took, please shoot me a line.
The first thing I did was fire my first oncologist. They told us their style of oncology is to be as reserved as possible and not try to do anything radical. This is exactly what we didn't want . They were dismissive with a lot of our questions about other treatments options and didn't want to offer us a second opinion in Toronto. They eventually relented and we got a second opinion which I'll speak to later. Our new oncologist is fabulous and has been extremely helpful working with us
We had a fair amount of other issues with the Ottawa hospital. It took them about 2 months to figure out I needed to be on chemo which is a long time in the Cancer world. The surgeon we spoke to also was misinformed with a lot of the newer technologies.
This next thing we did is we got the foundation one testing on the primary site biopsy. It was about $2,000 Canadian but was well worth it. It basically stated I had a KRas mutation. This became very helpful in understanding the future response I would see under systemic chemo.
I've gone through 12 cycles of chemo so far and my last CT showed my liver is clean. The primary site is no longer visible on scans. It was actually fairly clear after four cycles with only a few small areas of hypodensity but no measurable lesions. My CEA dropped from over 10 to 2 as well.
I had a pretty rare ( in a good way) cancer in that I had only one mutation and TMB was very low. I was also MSS Stable. I have read that this type of cancer is highly susceptible to standard chemo because it lacks other mutations that inhibit cell death. The kras mutation is only a driver.
My second opinion in Toronto gave me a much more optimistic outlook. They told me the pump was a path to cure and this was even before the 4th cycle scans showing an almost complete response.
So I wait a few months to clear out the chemo and I get my colon removed, resection if needed,.and the pump. I'll wear the pump for about 6 months to a year and it doesn't have any of the side effects like standard chemo. It floods the liver only and will hopefully kill any remaining sleeper cells.
If everything goes well I will be in remission.
Anyway, I hope this is helpful to someone out there in a similar situation and feel free to reach out if you want someone to talk to.
My husband is having FOLFOX chemo, on treatment 8 now. The 5FU is a 48 hour infusion and he is not able to tolerate food during those two days or the day after. He has lost 7 lbs since infusion and had a similar weight loss last round. I wake him every four hours for nausea meds. He can drink warm or hot liquids in small amounts.
On day 2 he also develops chest pain that is significant. He does not like to take the nitroglycerin and instead lays with heat and takes shallow breaths. I asked last appointment if he could see cardio-oncology about this side effect but was turned down and they just encouraged him to take the nitro.
Is this normal?? I had had chemo for breast cancer (NED now) and my team did NOT leave me to hurt. But maybe colorectal treatment is just harder and I have unreasonable expectations.
Would you mind sharing your experience with FOLFOX?
Hey all.
My wife (41f) was diagnosed with stage 4 metastatic colon cancer April 2026. Extensive METS on liver, left adrenal gland, and lymphatic in the pelvic and abdominal area.
She had her first PET scan on May 1st. She started FOLFOX with 5-FU on May 13th. She had her first PET scan since starting treatment this past Tuesday, and has completed her 7th round of treatment. On this most recent cycle, they added Panitumumab.
We got the results on MyChart, however we won't be seeing the oncologist until her next appointment which is August 19th.
I had a chart made of the findings on her first PET scan and her most recent scan.
Here's the TL;DR that I lifted from the scan write up.
IMPRESSION:
Overall, there has been response to treatment including:
1. Decreased FDG uptake associated with the primary malignancy.
2. Decreased intensity and extent of all hepatic metastases.
3. FDG-avid adrenal metastasis has decreased in size.
4. Persistently FDG-avid retroperitoneal lymphadenopathy has shown mixed interval change.
There has also been a significant decrease in diffuse uptake associated with the esophagus which was likely inflammatory as well as resolution of an FDG- avid paratracheal lymph node which may have been reactive rather than metastatic and related to the primary malignancy.
With all of this being said, has anyone seen scans like this before? Having a great response everywhere except the lymph nodes where some have shrunk but some have grown? I know stage 4 CRC isn't always a 💀 sentence, and we are trying to be optimistic . We are just so scared.
Thank you in advance!
-her loving yet concerned wife
I am seeking guidance on a legitimate Expanded Access/Compassionate Use pathway for Daraxonrasib (RMC-6236) for my father, who has KRAS G12D-mutated Stage 4 pancreatic adenocarcinoma.
My father was diagnosed with Stage 4 pancreatic adenocarcinoma in April 2025. His tumor molecular/NGS testing has confirmed a KRAS G12D mutation.
Treatment history
April 2025: Diagnosed with Stage 4 pancreatic adenocarcinoma
Molecular profile: KRAS G12D positive
Completed 12 cycles of FOLFIRINOX/FOLFIRI
Subsequently experienced disease progression
Treatment was changed to Gemcitabine
Completed 6 cycles of Gemcitabine
We are now urgently exploring appropriate treatment options following progression.
Why Daraxonrasib (RMC-6236)?
Because his tumor carries the KRAS G12D mutation, we are specifically interested in exploring whether Daraxonrasib (RMC-6236) could be an appropriate option for him.
We understand that RMC-6236 is an investigational therapy, and that eligibility, safety, and access must be assessed by qualified physicians and through the appropriate regulatory and clinical pathways.
We are not seeking to obtain the medicine outside medical supervision or bypass any regulations.
What we are looking for
We are trying to determine whether there is any legitimate way for my father to access RMC-6236 through:
Expanded Access / Compassionate Use
An appropriate clinical trial
A manufacturer-sponsored access program, if available
A patient-assistance or compassionate-access program
Any other legitimate pathway available to an eligible patient from India
Financial situation
We are a family from India and cannot afford the cost of accessing an investigational treatment privately.
Therefore, we are specifically looking for information about no-cost or manufacturer-supported Expanded Access/Compassionate Use, if such a program is available and if my father meets the medical and regulatory criteria.
We are prepared to:
Work directly with his treating oncologist
Provide his complete medical records and NGS report
Undergo any required medical assessments
Complete all regulatory, ethical and institutional requirements
Travel if required for an eligible clinical program
Follow all requirements of the treating institution and study/manufacturer
If you have relevant experience, please help
I would be extremely grateful for information from anyone who has:
Obtained RMC-6236/Daraxonrasib through Expanded Access or Compassionate Use
Information on whether Indian patients can currently access RMC-6236 through an Expanded Access pathway
Knowledge of ongoing or upcoming RMC-6236 trials that may accept patients from India or internationally
Contact information for the relevant manufacturer medical-affairs/clinical-trial or patient-access team
Experience navigating Expanded Access in India
Connections with an oncologist or clinical investigator involved in RMC-6236
Even a contact, email address, clinical-trial reference, or direction to the correct department would be extremely helpful.
We understand that there are no guarantees that RMC-6236 will work, and we understand the risks associated with an investigational treatment. We simply want to determine whether my father has a legitimate opportunity to be evaluated for this treatment.
After exhausting standard treatment options, we are trying everything possible to find another medically appropriate option for him.
If anyone can point us toward the correct Expanded Access program, clinical investigator, hospital, manufacturer contact, or patient-assistance pathway, it would mean a great deal to our family.
Thank you sincerely for reading and for any guidance you can provide. 🙏
Patient: Stage 4 pancreatic adenocarcinoma
Mutation: KRAS G12D positive
Diagnosed: April 2025
Previous treatment: FOLFIRINOX/FOLFIRI → Gemcitabine
Current objective: Explore legitimate access to Daraxonrasib (RMC-6236) through Expanded Access, Compassionate Use, or an appropriate clinical trial
Location: India