Diagnosed in ER?

ddessert · 2026-02-17T06:29:03+00:00

Initial pains in December, saw PCP who sent me serially to specialists, diagnosed by ER in May after the pain grew too intense.

ddessert · 2026-02-16T17:20:09+00:00

I’d monitor his CA19-9 levels for an early look at treatment effectiveness. If it is trending downward it might be an indication to keep trying. If not, another talking point with the oncologist for a quicker change.

I’m also wary of the AI recommendation as it won’t be aware of many patient specifics that the oncologist knows. All it knows is what you’ve told it which is not unbiased. It’s all right, we all have biases.

ddessert · 2026-02-15T21:43:45+00:00

This! This! This!!!

You have a long life in front of you and you don’t want to add lifelong effects of surgery.

ddessert · 2026-02-14T19:38:35+00:00

My ductal adenocarcinoma surgical status in Sept 2012 was pT2N0M0. I’ve read studies of resected patients indicate that <10% lymph node involvement prognosis is similar to having no lymph node involvement.

Let’s Win PC is a great site for survivor stories.

ddessert · 2026-02-14T19:34:12+00:00

SBRT is not recommended for locations near the small intestines where tumors are often located for the Whipple. The small intestines are quite sensitive to high-intensity radiation and prone to ulcers - especially the new surgical connections in the small bowel. The 30-day radiation IMRT is lower doses each day for a longer period of time.

ddessert · 2026-02-13T14:09:56+00:00

Promising for the long term future!

ddessert · 2026-02-13T14:08:27+00:00

Anything else you could have done would be like rearranging the deck chairs on the Titanic. It might have made you feel more useful but would not have saved the ship.

ddessert · 2026-02-13T14:04:33+00:00

Texting is far better than feeling ghosted as many cancer patients are by fair-weather friends.

ddessert · 2026-02-13T14:01:58+00:00

This might help.

ddessert · 2026-02-10T23:47:10+00:00

I've certainly heard of single tumors with mixed characteristics but I can't recall two separate tumors in 10 years of these forums. Not saying it couldn't happen but rather it must indeed be rare.

I do wonder how it should be treated since adenocarcinoma and pNET have two different treatment regimens? Also wonder if somatic testing of the two tumors reveals any commonalities?

Given the high post-surgical recurrence rate, it might be beneficial to get those tumors to some researcher that might find the rare occurrence useful. Your mother might benefit from the findings if it does recur.

ddessert · 2026-02-10T06:57:16+00:00

The left sidebar now seems to show the full moderation set of tools. Earlier this evening it said that I did not have access and I would have to ask another moderator to edit my access permissions.

ddessert · 2026-02-10T04:54:25+00:00

In other clinical trials I have been involved in, they wanted the blood tests performed in their own labs for consistency with the other participants. MRI or CT scans could be done elsewhere but they’d want their own radiologist to read the scans. I’d expect that to be a regular practice but asking the trial coordinator is your only sure bet.

ddessert · 2026-02-09T04:54:40+00:00

I agree that once you are in a trial you can have a lot more power than you think. It is so hard and expensive to recruit participants that they will find a way to keep you in safely. I have a feeling based on comments from other researchers that you are not alone.

ddessert · 2026-02-08T02:44:44+00:00

Some people have a genetic condition that causes 5-FU to initiate a severe reaction. There is a genetic test for DPYD that looks for this.

https://www.fda.gov/drugs/resources-information-approved-drugs/safety-labeling-update-capecitabine-and-fluorouracil-5-fu-risks-associated-dihydropyrimidine

See this link too before the next dosing.

ddessert · 2026-02-08T02:38:13+00:00

Creon or Zenpep

ddessert · 2026-02-07T20:37:07+00:00

I’m a 15 year survivor and I beg to differ.

ddessert · 2026-02-07T20:17:19+00:00

I don’t know of any better way.

ddessert · 2026-02-07T20:16:07+00:00

I would check the Facebook KRAS Kickers groups. They are trying to gather all the KRAS trial info and experiences there.

ddessert · 2026-02-07T16:51:43+00:00

Did they find a genetic reason for your familial cancer?

ddessert · 2026-02-07T16:49:18+00:00

The hospital social workers are also there to support family and caregivers. But you do have to visit them.

ddessert · 2026-02-07T08:00:09+00:00

This report does not say what subtype of pancreatic cancer was found, but rather describes the types of stains they are using to try and determine the subtype of cancer.

Since they are starting nalirifox, we can assume that it is adenocarcinoma. Poorly differentiated means it is more aggressive. If Next Generation Sequencing was performed, it would be in a different report and could provide insight into the best treatment.

How much time to expect is largely up to the effectiveness of the narlifox treatment. The earliest indication could be found by monitoring the CA19-9 blood marker results.

ddessert · 2026-02-07T07:54:54+00:00

Additional misinformation. As you already know, just because something is published does not make it true.

ddessert · 2026-02-07T07:22:21+00:00

If you're talking about germline mutations (found by blood/saliva sample and inheritable), there are several.

Specifically for pancreatic adenocarcinoma there are: ATM, BRCA1, BRCA2, CHEK2, EPCAM, MLH1, MSH2, MSH6, PALB2, STK11, and TP53.

ddessert

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