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Stage IV

Pancreatic Cancer | Last Active: Aug 18, 2023 | Replies (29)

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@markymarkfl

I did OK on 12 rounds of Folfirinox before Whipple, and just finished my 12th round post-Whipple round of Gemcitabine + Abraxane + Cisplatin (GAC)

I think what they generically call "Folfirinox" now was briefly called "mFolfirinix" for a few years, but the "original Folfirinox" cocktail was a bit stronger with some of its ingredients. @stageivsurvivor was on that one, and can probably provide the specific differences.

As far as anti-nausea meds, I don't remember what was mixed in with my Folfirinox. But with the GAC, I was getting Emend, Zofran, and dexamethasone plus fluids before my started flowing. They reduced my dexamethasone (steroid) by 1/3 a few sessions ago, as it was helping drive my blood sugar through the roof. Two sessions ago, we switched the pre-med from Zofran to Aloxi; it works on the same receptors, but supposedly lasts a little longer in your system. I'm not sure I can tell any difference.

For post-infusion, I have Zofran, dexamethasone, and Compazine, for use in that order, based on severity. So far, I'm mostly only using the Zofran. I've used the dex a few times, but restrict it to mornings so it doesn't interfere with sleep. Haven't needed the compazine yet. I do occasionally find some relief from a CBD gummy or CBD oil. Haven't resorted to medical marijuana because of job restrictions and a previous bad reaction, but I do have a prescription for Marinol (aka Dronabinol, synthetic THC) which is FDA approved and legal in all 50 states, so not subject to state-based medical marijuana laws or problematic with federal agencies. But that bottle remains untouched as well.

With time, he should be able to determine what foods he can keep down, and focus on those. Retaining weight before a pancreas surgery is important. I lost 10% body weight (16 pounds) in the two weeks after Whipple.

For whatever surgery is performed, ask to have a prescription of Creon (or other appropriate enzymes) filled before going home. I didn't get them until my 1-month follow-up, but might have reduced some of the digestive misery sooner if I'd had the Rx.

For the surgery itself, the ability to do it laparascopically does demonstrate a level of expertise, but my surgeon preferred the open technique for better access and ability to finish faster (less time under anesthesia).

I would also ask all your candidate surgeons about the option of total pancreatectomy instead of Whipple, and please share what you learn here.

In Whipple, they cut away parts of the pancreas head (where the tumor is), look under a microscope for cancerous cells at the margin, and then cut more pancreas out if they find them, before connecting whatever pancreas remains back into the rest of your digestive tract.

I recommend asking the above because those looks under the microscope are far from perfect. My cancer recurred at the surgical site 3 months after Whipple, presumably because of missed malignant cells during the procedure. Also, if your pancreas is already on a downhill track, there might be other "lesions" or tissue prone to turning malignant later. If the cancer was fully confined to your pancreas, and you removed the entire pancreas, you'd never get pancreatic cancer again.

But the above, since he's already Stage-IV metastatic, would only be in the context of something like HIPEC surgery (where they try to remove everything cancerous, and then directly wash the entire abdominal cavity with chemo while still open).

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Replies to "I did OK on 12 rounds of Folfirinox before Whipple, and just finished my 12th round..."

The original Folfirinox that was FDA approved in 2011 and used until 2018 was 20% higher in dosing of 5-FU, Irinotecan and Oxaliplatin.

(m)Folfirinox- (the “m” standing for modified) was FDA approved in 2018 and is the current “gold standard”. In clinical trials comparing it to the original formulation, it showed just as good efficacy at the 20% reduction of the components and the tolerability was better.

William Isacoff MD (UCLA) was one of the principal investigators running the clinical trials of Folfirinox and (m)Folfirinox. He is a proponent of metronomic dosing where the patient receives a lower dose but infusions are more frequent. This has improved the tolerability while maintaining efficacy.

So very helpful. Thank you so much. We will be asking all these questions and whatever updates I have, I will be sure to post here. Can I ask...at diagnosis, what stage were you? I'm hoping my brother continues to do as he has with the folfirinox and finds foods that he can tolerate while having the nausea. Or hopefully, they can modify his meds to cause less of this.