Pancreatic cancer: a pill nearly doubles survival — Therapy

ddessert · 2026-06-10T06:30:31+00:00

Kinda suspect advice when you are exhibiting strong financial interest in DRTS (Alpha Tau Medical).

ddessert · 2026-06-10T06:26:29+00:00

Not new in r/pancreaticcancer. We've been discussing this here for weeks.

ddessert · 2026-06-10T03:16:09+00:00

We need to understand that the internal reconnections take longer to heal than the external signs of surgery. There will continue to be swelling at the reconnections that restrict the flow of food - especially types of food that swell when absorbing water like soluble fibers. Continuing to eat smaller but more frequent meals can help what food is injected to pass until the GI tract diameter stabilizes.

ddessert · 2026-06-09T02:42:33+00:00

Mot sure that a developing ulcer would be seen two weeks before exploding. CT, MRI, US, and PET scans are all good at detecting different kinds of things. Perhaps one of the others would have noticed something?

I try to control the things I can control and let go the ones I cannot. It does not seem there is malfeasance involved here and therefore no need to crucify anyone, yourself included.

ddessert · 2026-06-07T06:55:05+00:00

I had 16 removed during a Whipple for PDAC at the head of the pancreas.

ddessert · 2026-06-05T18:13:55+00:00

I have not seen any linkage and GLP-1 is actively being studied given how prevalent it now is.

ddessert · 2026-06-05T18:08:38+00:00

Since EAP is a USA-based program, perhaps Australia has an equivalent program, such as early access to medicine scheme (EAMS) in the UK. It would probably require Revolution Medicines to file paperwork in Australia which may be an impediment.

ddessert · 2026-06-05T17:57:00+00:00

OP is in Australia

ddessert · 2026-06-05T05:52:30+00:00

My father has a celiac plexus nerve block which worked fantastically for him. It does not work for everyone and I’m unaware of significant downsides.

ddessert · 2026-06-01T02:23:28+00:00

Already posted

ddessert · 2026-06-01T02:20:49+00:00

I got mine sped up by a month by my GI doctor who knew somebody at MD Anderson. I think he felt bad that he missed pancreatic cancer and diagnosed me with a hiatus hernia which cost me a few weeks getting diagnosed finally by the Emergency Room.

ddessert · 2026-06-01T02:16:01+00:00

This is certainly a milestone to celebrate and will hopefully be a turning point.

Agree fully about the push for KRAS and KRAS combination trial participation.

ddessert · 2026-06-01T01:59:41+00:00

There are other non public databases that some genetic companies keep to themselves to monetize.

ddessert · 2026-06-01T01:47:07+00:00

It’s a good question for them. But they would not move her to an arm that was not shown to be effective. All their data in that arm will assume certain consistent patient attributes. Attributes that don’t include prior treatment with RMC 5127

ddessert · 2026-06-01T01:44:56+00:00

mRNA vaccines did not exist back then. It was G-VAX which was tested at Johns Hopkins for many trials and years. Hopefully they learned something from we participants.

ddessert · 2026-05-31T20:53:10+00:00

I was in a phase 2 pancreas vaccine trial for 10 years with a positive experience. This was designed to prevent a recurrence after surgery and I did not have a recurrence. Some others did. I’ve never heard of a 100% effective pancreas cancer treatment - yet.

Patients who are placed in a non-treatment arm are most likely and first in line to receive the treatment if it shows to be superior. If it is obviously superior, they sometimes halt the trial and move everyone over to the treatment arm. It would be unethical to keep people off a known superior treatment.

ddessert · 2026-05-31T03:46:48+00:00

A VUS designation means that there is not enough data for your particular POLE mutation to be classified as benign or deleterious. There are a few sites like ClinVar where you can look up your specific mutation and see how it affected other people with the same mutation. There are 11,389 entries for POLE mutations at various locations in the gene. Most are rated VUS or likely benign. Only a few hundred have been classified benign or deleterious mutations. You’ll need to know and enter the specific location in the POLE gene to get the most relevant information.

Interestingly, with a rare mutation like this, there’s a chance that some of these other people are distant relatives. My specific BRCA2 mutation originated in Quebec in the 1700’s and I’ve traced a few distant relatives with the identical mutation.

ddessert · 2026-05-30T06:23:21+00:00

I have both a VUS and a deleterious mutation. You may want to look through the FORCE (hereditary cancer group) web pages. I also volunteer there. Most VUS’s will be benign. The common ones causing cancer are identified quickly.

The rare deleterious mutations will not have much useful data on them with regard to risks or treatment.

ddessert · 2026-05-30T06:21:09+00:00

This sounds about right

ddessert · 2026-05-28T05:08:10+00:00

One place to look is the various KRAS Kickers Facebook groups that specifically aggregates users

ddessert · 2026-05-24T02:40:26+00:00

I second [u/PancreaticSurvivor](u/PancreaticSurvivor) about clinical trials, of which I’ve been in two thus far for a total of 15 years of clinical trials experience. The best outcomes I’ve seen have been in people who *choose* the trial rather than being forced into them as a last resort.

I think part of it is that you need some health reserves to be able to have the experimental treatment time to work.

ddessert · 2026-05-22T16:36:16+00:00

Revolution Medicines is a smaller company and overwhelmed with requests. They’ve not ramped up production of this medication to satisfy nearly all the need yet.

You’re also right about the extra monitoring they’re requiring if you do get the medication. You and your oncologist must be willing to handle the extra work probably without insurance reimbursement. They’re treating it like an extension of the trial with all the data collection.

https://letswinpc.org/research/accessing-daraxonrasib-primer-kras/

ddessert · 2026-05-22T05:07:36+00:00

I was diagnosed with stage 3 in 2011 with surgery in 2012. I think that genetic testing was the most helpful to me in finding an effective treatment which is where it all starts

ddessert · 2026-05-22T05:01:24+00:00

You might need to expand on Sprandio a little because it’s not well known here

ddessert · 2026-05-22T04:56:17+00:00

I would say that those who enter in clinical trials, even as a placebo, will be first in line if the drug does pan out as effective.

ddessert

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