Pancreatic Cancer Recurrence after Whipple

@stageivsurvivor I definitely want to achieve long term survival, your story is inspiring! I am getting good reports right now, but it is the sneakiness of this cancer, coming back, that concerns me. I had 8 rounds of full blast fulfirinox, 5 before the Whipple, 3 after, but the dosage was lowered last cycle as my platelets were too low to continue, and so had had 6 wks of delays after the last 2 rounds, still too low after the last round with reduced chemo so again delayed. I have asked if there’s anything I can do to raise my platelet count but have been told that it just takes time. So now have 3 rounds left, hoping to get going again within the next two weeks. If you know anything I should be doing/trying, I’d appreciate it. I have been very fortunate in some ways, the cancer was stage 1, on the head of the pancreas, Whipple went well. But I want to do all I can to keep going, more than a year or two, expecting my first grandchild in February, and my first published book is coming out in 2027. Thank you

@katieliz Hi! My mom had platelets and RBC infusion fur to having to severe bleeding rather than just FOLFIRINOX causing it. What caused the bleeding is the hemorrhoids from severe diarrhea after 3rd round of chemo, and norovirus. She was on Eliquis for liver thrombosis which exacerbated this problem. Her levels are good now since they have platelets. Have they offered that to you?

P.s. I also come to read @stage4survivor ’s posts to induce a daily dose of positive reinforcement and hope.

No radiation. I did specifically mention that I was willing to go through it if necessary when I was advocating for the more aggressive chemo using Folfirinox. I was reading the latest scientific papers in 2012 when I was diagnosed and the European pancreatic cancer oncology community was doing clinical studies. I was having such a robust response to Folfirinox that they felt there likely be no benefit. And in the end it was the additional chemo cycles that took care of any minimal residual disease.

@stageivsurvivor What are your thoughts on Nalirifox vs Folfirinox? Same thing or better? Nalirifox is a chemotherapy regimen that consists of 4 different medicines, 3 of which are chemotherapy agents and one is similar to folic acid (from Drugs.com):

Onivyde (irinotecan liposomal), a chemotherapy agent encapsulated in a liposomal base to allow for more sustained blood levels of irinotecan
Oxaliplatin, another chemotherapy medicine that is a platinum-based alkylating agent that forms cross-links in DNA
Fluorouracil, an antimetabolite chemotherapy treatment that disrupts the formation of DNA
Leucovorin is a medicine similar to folic acid that is used to protect healthy cells from the side effects of chemotherapy agents.

Thanks!

@vp02 I also had low platelets and needed blood transfusion. Doc told me I had chemo induced colitis, which I got real crampy an had a lot of blood in stool. I am also on Elequis. So basically I think it’s the colitis to that sent me to hospital.

@valerina30 Thank you so much for letting me know. I think they checked for colitis too but will have to review her chart. She’s had two RBC transfusions and 4 platelets so far this week. Still hospitalized.
Her 5th FOLFIRINOX chemo is next Wednesday but our family, as well as the oncologist, agree that at this rate she wouldn’t be able to have her regular chemo.
We are reviewing a few options:
1. Switching to gemcitabine and ambraxane
2. If it is determined that irinotican is the issue then o on FOLFOX by omitting irin.
3. Modify FOLFIRINOX dosage to 80%. But even with modifications we are afraid the severe diarrhea and blood loss may persist.

Not sure if anyone else has had GI issues that include shedding of lining, blood in stool and diarrhea, if so, what solutions did they have, if any.