Stage IV

Thank you for this information @mimimmx. He lost about 12 pounds in the few days following treatment. As soon as he started feeling better, he has put 8 pounds back on. He's eating at least 2000 calories a day and drinking at least 1800ml water per day. On his day of chemo, he did have anti nausea and fluids prior to infusion. When they disconnected his 5FU pump 2 days later, they gave him more IV fluids and anti-nausea. They wanted to do more fluids 5 days later but he didn't at all appear dehydrated and he was eating and drinking like a champ. He got really annoyed because on his week off of chemo, he doesn't want to go into an infusion center...which I understand that. They recently gave him Olanzapine as well. Do you stay on the Olanzapine daily (they told him to take it at night) in addition to the compazine and zofran every day after infusion up until your next one OR only when nausea presents himself? You have been super helpful. Sounds like you are doing great during your infusions? Are you seeing someone at the Mayo Clinic?

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).

I got an initial treatment with Folfirinox. Landed in the hospital on the 3rd day, not with nausea or vomiting just extreme weakness. My oncologist and I discussed alternatives. I have BRCA1 and was aware that platinum drugs had specific benefit. I went with Oxyplatin and 5-FU infusion pump. I had three treatments with chemo before my initial consultation with Dr. David Kelsen at Memorial Sloan Kettering Cancer hospital. He advised that they usually recommend oxyplatinin and gemcitabine as an optimal combination for BRCA1 but if the 5-FU was effective, we should continue. The repeat CT angiogram showed stabilization and the tumor was slightly smaller, CA 19-9 came down from 1750 to the 500s. I was seen again after the 8th treatment and advised that a vein repair would be needed. Since I was doing well with the chemo, we went with another 3 cycles. I was developing neuropathy and then on the 11th treatment, had an allergic reaction with the oxy. 5 FU alone was continued. I followed up with the surgeon at MSKCC end of May and he thought things were optimal. Had my Whipple's on the 21st June and am waiting for pathology.

Other than my first treatment, things went OK. I got Aloxi, Emend and dexamethasone premedication. At the end of the second day of the 5-FU infusion, I would feel just a little queasy and took Compazine since Zofran didn't do much of anything for me, I sometimes took another couple of doses of Compazine. Never vomited once. For the 5-FU I asked to continue with the Emend. I took with my chemo for ovarian cancer in 2005 and never had difficulty with nausea. I got Emend and dexamethasone. The initial chemo in 2001 after breast cancer surgery. Adriamycin and Cytoxan. I had severe nausea and was hospitalized. Zofran did nothing but dexamethasone worked wonders. I took it before my subsequent treatments and did fine. 2001 was before the days of Emend and Aloxi.

Worst symptom was the fatigue with all three of my cancers has been fatigue with chemo, but I did learn to manage with it and tried to get ready for the next cycle of chemo when I was at my best. Got the lawn mowed, did the groceries, laundry etc. I live alone and need to manage for myself. The neuropathy is bothersome, I take gabapentin and don't have pain but function in my hands is reduced and my balance is not as good.

My sister also has BRCA!, also on her 3rd cancer. Her doctor couldn't see fit to give her a good anti nausea regimen. I sent a copy of my chemo record. She is unfortunately being treated at an institution that is great with research (University of Michigan) but pathetic at treating patients with compassion and respect. I feel most fortunate for being treated with compassion and respect as well as excellence. I don't understand doctors who can't seem to get it together and provide optimal symptom relief.

I take Olanzapine every night. 10mg on day of infusion and next four nights. Then back down to 5mg. On the other anti nausea meds, I use both Zofran (when I wake up, mid day and when I go to bed). And compazine twice a day in between the Zofran. That is for the first week post infusion. Second week I pull pack to Zofran only in morning and before bed. I do think the Olanzapine was the game changer for me. If I have diarrhea, I take two Imodium right away and that stops it. I still get fatigued easily with long work days, but overall I can function very well.

I am I. Lexington Kentucky and being treated at the University of Kentuckey’s Markey cancer center.

Pre-meds are always in the IV. I would bet he is getting them.
The compazine, odansetron, etc are pill form for as needed.

Pre meds usually include a steroid and an anti-nausea at minimum.

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.

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).