Pancreatic Cancer warriors I hope you get great news like me

I am so glad to hear that your husband is doing very well after Whipple!! Your treatment plan is exactly the same as mine. I hope my recovery will be just as good as your husband's. Thank you for sending me positive vibes.

I was told I was pre-diabetic and prescribed Glipizide 2.5 mg. I tried this drug, but I could not tolerate it, and stop taking it. I am planning to eat well and exercise a lot to control my rather high glucose level. My A1C is 7.1. Has anyone used OTC natural herb complex and seen improvement?

Certainly I would seek a second opinion before going to surgery. I believe a “complete round” of 5FU is 12. If the chemo is working, I would want to shrink that tumor (and kill other possibly circulating cancer cells) as much as possible before surgery since chemo must be delayed for a period of time after surgery.
However, perhaps the tumor is at a size now that reducing more would not make it any more easily resectable. Go for a 2nd opinion!!

Hi Thawk32
So happy for you!
What was your stage and what kind of treatment we receive?
Is it the Filfirinox ?
Take care .

Sorry
Was it unresectable? What kind of chemo you received? Was it Filfirinox?

I started with Oxaliplatin with 5-fluorouracil and Filfirinox. They dropped the Oxaliplatin after 11 treatments because of neuropathy. I’m now on Filfirinox and 5-fluorouracil Which I get a slow does over 46 hours at home. When I first started they went with a most aggressive treatment because I was healthy and I agreed that’s what I want to do. I’ve now have done. 42 treatments.
Sending my prayers 🙏🏻🙏🏻🙏🏻

FOLFIRINOX is a first-line regimen of 4 components.
FOL = Folinic Acid which is a reduced form of the vitamin folic acid and the brand name is Leucovorin calcium.
F = 5-Fluorouricil. It is the most toxic of the agents and infused slowly over 46 hours.
IRIN= Irinotecan which affects fast growing cells in the GI tract and causes diarrhea. The brand name is Camptosar.
OX =Oxaliplatin also known as Eloxatin. It is neurotoxic to peripheral nerves, e.g., hands, fingers, feet and toes.

Some oncologists May dose their patients of six cycles followed by just 5-FU and Leucovorin. The irinotecan and oxaliplatin are removed for the next six cycles. This is to give the body a rest and recover. I was dosed using this alternate method which reduced the neuropathy and the symptoms I did have from 24 cycles of Folfirinox and eventually resolved after a number of years. The alternate cycles of 5-FU/Leucovorin totaled 22 making for a combined total of 46. End result of the additional chemo beyond the standard of care 12 cycles was NED. Minimal residual disease (MRD) was destroyed. What remained of the significantly shrunken tumors was scar tissue which eventually was cleared from the liver by immune system cells.

At 10 years I was told by several oncologists I achieved cure but to remain vigilant and continue scans as those with a remaining pancreas have a propensity to develop a new primary tumor. When you hear of patients that developed pancreatic cancer again after seven years of more, that is from a new primary tumor. I know of two individuals that after reaching five years, stopped with surveillance. Both at 10 years from initial diagnosis and Whipple surgery developed new primary tumors in the remaining pancreas and succumbed to it. This is why I continue getting MRI’s twice a year and ctDNA which is extremely sensitive and eliminates radiation from a CT.

I am a retired endocrinologist (specialist in diabetes). I suggest asking your oncologist if there are any possible side effects of a supplement. If not, you can try and check a blood sugar before and after a meal and see if it does anything. You likely have diabetes with an A1C of 7.1%. Over 6.5% is in the diabetes range. Fasting glucose over 126 on two occasions makes the diagnosis of diabetes. For diabetes, A1C of 7.1% is good and if it stays in that range. In that range you might have problems with low blood sugar with diabetes medications. You can visit the American Diabetes Association website for more info. If there is a certified diabetes educator available to you, also a good resource. The American Diabetes Association website has information about ADA accredited diabetes education programs.

I appreciate your comments about continue surveillance. I had ovarian cancer in 2007 and have continued annual physical exams and tumor marker blood test, although I suppose after nearly 16 years, you could say I'm cured. It was made pretty clear to me, though, that I should never assume I'm cured and should stay vigilant. I am convinced that helped us spot the pancreatic cancer earlier than is typical; I'm kind of hyperaware of things that aren't "right." Also, thanks for sharing the details on your chemo regimen. I haven't started yet; the first round of modified Folfirinox is scheduled for Monday 4/24. But I have been concerned about the peripheral and cold neuropathy associated with oxaliplatin. I had a little neuropathy in my hands with the carboplatin in 2007, but I have to admit the cold neuropathy really freaks me out. So I need to make a note about the alternative regimen in case I need to inquire later.

Could I ask the Whipple surgery patients their ages & if they were in great health prior to surgery because I am so concerned about my husband's age & fragile condition from prior complications from ERCP's , twice sepsis , necrotizing pancreatitis, pneumonia etc...

Thank you for this great and encouraging discussion. The statistics presented to a new person with stage 4 pancreatic cancer are so grim that we really need more discussions like this to keep us encouraged. I really appreciate you all and feel like as I start on this journey that I have a chance at life as I endure all the difficulties of this intense chemotherapy regimen! Thank you Thank you Thank you!