← Return to Advice needed about my Mom

Discussion

Advice needed about my Mom

Pancreatic Cancer | Last Active: Mar 20, 2023 | Replies (23)

Comment receiving replies
@stageivsurvivor

Your Mother is definitely a fighter and survivor in what she has gone through. During my 11 years as a survivor having been stage IV with the rare (1%) Acinar Cell Carcinoma, I experienced and had to overcome a great deal of adversity.

To address the fullness, acid reflux and loss of weight:
I initially had Whipple surgery and was put on the proton pump inhibitor (PPI) omeprazole (generic of Prilosec). On occasion when I felt acid reflux after having a late meal, chewing 2-4 Tums tablets quickly resolved the discomfort. Issues with fullness were addressed by going on supplemental pancreatic digestive enzymes as I was exhibiting Exocrine Pancreas Insufficiency (EPI). I was not producing enough amylase, lipase and protease to thoroughly digest food. That resulted in gas production, feeling full and experiencing malabsorption leading to weight loss. Being prescribed the pancrealipase Creon and adjusting my eating habits of consuming more easily digestible foods, less liquid intake during the meal, chewing slowly and thoroughly, smaller portions more frequently, and eliminating the harder to digest vegetables unless I took the OTC product Beano (enzyme alpha-d-galactoside needed to digest vegetables that are the more complex oligosaccharides.

Flatulence
https://flatulencecures.com/vegetables-that-cause-gas/
I did a very aggressive chemo regimen of full-dose of the original formulation of Folfirinox from 2012-2014. Today’s (m)Folfirinox starts of at 20% less concentration of 5-FU, Irinotecan and Oxaliplatin. Dealing with the side effects was a bit of mind-over-matter and using pre and post medications to control symptoms. My cancer was not going to control me. I practiced gratitude every day. I opened me eyes and got out of bed…it was a good day!

When I learned I had a targetable gene mutation, my search took 14 months until the ideal trial opened. During that time I stayed focused. Working at a large medical center, every day I saw patients who experienced horrific accidents and I’m sure considerable pain. Yet they endured and were thriving. They became my inspiration. If they could do it, so could I.

After doing 46 cycles of chemo over 24 months, (24 of Folfirinox and 22 of 5-FU/Leucovorin), I was NED. The clinical trial was 18 months of maintenance monotherapy. It is an easily tolerated oral medication and I still take it 8.5 years now. Doing all that chemo and staying the course was well worth it. I had invested a lot between having surgery and the aggressive chemo. I wasn’t about to give up. It paid off. Having been stage IV, I not only achieved NED but was declared cured at the 10 year point by a number of oncologists. They all agree doing the chemo played a significant role in my surviving and now thriving.

Jump to this post


Replies to "Your Mother is definitely a fighter and survivor in what she has gone through. During my..."

Amazing. Thank you for sharing stage iv. Im baffled that they would initially do a whipple on a stage 4 patient
Im stage 3 with smv involvement. And it wasnt an option for me.