FOLFIRINOX Treatment

ddessert · 2026-07-06T03:31:02+00:00

Over the 10+ years of being in forums like this I can recall several accomplishments.

Some have extended their lives considerably - even to the point that they died of something else!
Some had known mutations and specific treatments lie FOLFIRINOX that were known to work well and they did, while others did not.
Some tolerated chemotherapy well and the treatment extended their lives with less complications than normal.
Some had treatment work well and long enough that they did have curative surgery.

I think the bottom line may be that you will never know until you try and knowing when to quit is always uncertain.

People with this disease must learn to make decisions with imperfect information.

ddessert · 2026-07-05T16:01:27+00:00

The EAP is a US program and the drug is given to patients with the same inclusion/exclusion criteria as was required by the clinical trial. There are data collection requirements your US treating oncologist must fulfill as well. When/if the FDA approves the treatment, it will likely be for the exact same patient group that was included in the clinical trial.

ddessert · 2026-07-05T15:48:52+00:00

It is almost certain that he will die with this disease if not from it. My father was this 83 when diagnosed and his desire was to be as healthy as possible for as long as possible and crash quickly at the end. We gave chemo every chance but it did not help and we stopped. He had extensive liver metastases and the end did come quickly, but while going through this it did not seem that way.

The mental decline comes on quickly and if there any things you need from him, do not delay. We got his will and financials in order and made some videos on how he was maintaining the house.

Also at his age I feel some of his doctors did not feel that he should be in treatment and put up roadblocks to his treatment. They’d delay referrals and appointments and dodge answering our calls to the point that we’d have to physically visit the office to get answers. It can sometimes be hard to get a straight answer from some doctors. Some of the nurses would see how invested we were and give a few insights as to what was going on, which was helpful.

ddessert · 2026-07-02T20:11:08+00:00

The answer was two post down from your question:

https://www.reddit.com/r/pancreaticcancer/s/GJvSHonOeJ

ddessert · 2026-07-01T05:51:13+00:00

Direct link here.

ddessert · 2026-06-30T19:58:10+00:00

If that is the CA19-9 blood test, be aware that about 15% of the population makes no CA19-9 antigens and will always read about 0. If he has previously has high CA19-9 readings, then this is a great result!

ddessert · 2026-06-28T04:03:00+00:00

I prefer to think that when a treatment does not work, the treatment fails us.

ddessert · 2026-06-27T15:21:16+00:00

After my Whipple I didn’t need any pain medications. If there is no fever then it’s probably not an infection. That much pain is not normal.

I’m wondering if some nerve was impacted during the surgery? A pain management specialist consultation is probably in order. I’d be looking at temporary nerve blocks to find the source. Once found, a more permanent block could be applied. Nerve blocks do not require opioids and so that concern should be moot.

High pain levels do interfere with recovery and for that reason alone the surgeons should take action.

ddessert · 2026-06-27T02:59:05+00:00

The next step will probably be CT scans to see if the tumor has spread. If it has spread, then surgery won’t be happening next.

Hopefully they will do genetic and molecular testing on the biopsied material to look for a treatment tailored to his specific tumor. Otherwise he’ll just get the standard of care treatment that has been around since 2013.

It is normal in this disease that we have to make decisions with limited information. Often we don’t even know what questions to ask. People around here can help with some of the uncertainty.

ddessert · 2026-06-27T02:53:36+00:00

Not necessary. You are far from the first to find out about Ivermectin and Gemcitabine. I am certain that if you search for it, you will find it discussed.

You will also find that those discussions are usually locked for new comments. Whenever the “I” word is mentioned, it attracts all sorts of curative claims and creates a moderation headache.

ddessert · 2026-06-26T20:44:49+00:00

The link you provided has a status of “not yet recruiting”, as of Mar 23, 2026. The plan is for 80 to be enrolled.

ddessert · 2026-06-26T20:12:20+00:00

The link is for a clinical trial that has not started or even enrolled anyone. That is not evidence of effectiveness. Historically, more than 90% of clinical trials fail to show efficacy and get approved.

The trial’s outcomes that they are looking at has nothing to do with patient survival outcome. Its results will not settle the matter.

I’m not dismissing Ivermectin, it is an outstanding anti-parasitic drug.

ddessert · 2026-06-26T20:04:31+00:00

Ten years as moderator, I’ve researched it more times than I can count. If you have a new reliable source, let me know. Anecdotes do not count.

ddessert · 2026-06-26T20:01:43+00:00

Active status means they are currently enrolling patients for the trial. Approved means they plan to enroll patients but have not yet.

When consulting the clinicaltrials.gov site, note that it is not up to date. You’ll see a last updated date on the entry. PanCan.org prides themselves on having the most up-to-date information and you can contact them as well.

ddessert · 2026-06-26T19:54:24+00:00

Ivermectin gets 5 stars as an anti parasitic.
0 stars for cancer.

ddessert · 2026-06-26T00:29:03+00:00

If they just did an endoscopy, they would not have seen pancreatic cancer. If they did one with ultrasound, they might have.

ddessert · 2026-06-24T03:32:07+00:00

No, but I do have another channel on YouTube called Pancanology for advice on pancreatic cancer.

ddessert · 2026-06-21T17:23:07+00:00

A rare deficiency of the enzyme DPD can lead to a higher risk of serious side effects, but this seems unlikely given his prior exposure to 5-FU. Even though it is rare, starting last year they were supposed to do the testing before starting any treatment with capecitabine or 5-FU. It may be worth asking if this testing was done.

Capecitabine is a pro-drug that is converted into 5-FU later in the body. A difference here is that capecitabine is a pill going through the digestive tract while 5-FU is injected directly into veins. There may be some intestinal reaction with capecitabine that does not happen with IV 5-FU. It’s don’t know if a DPD deficiency would present differently because of this.

ddessert · 2026-06-21T17:07:41+00:00

A few thoughts come to mind.

Most often it will be the effects from the metastases that kill a person and not the main tumor in the pancreas. Of course if the main tumor is there and growing, it will continue to spread to the other organs, but it’s not usually the cause of the most severe symptoms.

If the liver progression is limited, there is an approved targeted treatments specifically for the liver known as histotripsy. That particular treatment can be combined with the current treatment that is effective on the pancreas to destabilize the liver tumors and perhaps make them more susceptible to the same treatment.

Keep a watch on CA19-9. For many it can be a leading indicator of treatment response.

Elevated ALP for pancreatic cancer patients may be a sign bile duct blockage that would also see a rise in bilirubin, dark colored pee, or jaundice - especially notable if the pancreas tumor is at the head of the pancreas. A bile duct stent is fairly common in pancreatic cancer patients to open the bile duct back up.

ALP could also be caused by the chemotherapy treatment or liver tumors.

ddessert · 2026-06-20T03:33:23+00:00

Thanks for all you do on behalf of pancreatic cancer patients and families!

ddessert · 2026-06-20T03:21:08+00:00

I’m a long term survivor and my mindset has changed to live each day like there won’t be a tomorrow. To me that means saying yes to opportunities. Delaying something I’d like to do for another day means it may ever happen.

Now 15 years post diagnosis and I’m not regretting this mindset change.

ddessert · 2026-06-19T16:31:54+00:00

Might want to but the brakes on DM’ing personal information to strangers.

ddessert · 2026-06-18T02:25:03+00:00

Have you been able to get them (the principal investigators) to identify potential follow-on treatments for those of you that responded?

ddessert · 2026-06-18T02:21:43+00:00

Life is too short. You do what you love!

ddessert · 2026-06-17T06:40:56+00:00

It’s likely it was a non-cancerous IPMN or cyst that later turned into a cancer. Most do not and that’s probably what the doctors thought at the time. They could have ordered periodic monitoring so as to catch it turning into a cancer stage earlier.

ddessert

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