Pancreatic Cancer Group: Introduce yourself and connect with others

@gretchenb
I am sure there are many variables in a surgeon’s decision. Once the cancer has been found in other organs one knows it’s in the bloodstream. Perhaps operating on him is dependent on where his tumor of origin is located in the pancreas. Yes. I was stage IV. It did not happen all at once. It was a sequence of treatments, with Y90 preceding liver resection.

Thank you. I am not sure. It wasn't talked about that I remember and maybe this is a newer way of referencing cancer. After doing a quick search of the acronyms, I see that it is talking about genetics. I can tell you, though that two people that I have talked to first hand, had gene tests, and they did not have a gene that would identify pancreatic cancer. However, they both had pancreatic cancer. I am not sure if what you are asking is related to gene testing. I would have to go back into my medical records, but like I said, I don't remember it being documented.

I was diagnosed October 22, 2022. I had the whipper procedure January 11, 2023. But I am having a nightmare and a rollercoaster with my digestive system and eating. I have to stop eating a lot of healthy foods. I get nausea, fatigue, lightheaded, belching, rectal leakage with poop, urine leakage, burps, dizziness, weakness, exhausted, acidic taste, vomit, stomach pressure, etc.

Thank you!

That’s weird: at the mid-trial evaluation you linked to the Overall Survival showed no benefit, though “progression-free” time was distinctly extended. Checking the 2022 followup report after the full trial… the same result held. One would think a discussion of the placebo-identical Overall Survival would have been included, but nope.

[https://snucm.elsevierpure.com/en/publications/overall-survival-results-from-the-polo-trial-a-phase-iii-study-of ]

Scratching my head. I’ll definitely ask my oncologist what this means!

The Whipple procedure respects the head of the pancreas-the section which contains the vast majority of acinar cells which produce and secrete the digestive enzymes amylase, lipase and protease. In many patients, it causes Exocrine Pancreas Insufficiency (EPI) also referred to as Pancreas Enzyme Insufficiency (PEI). The result is inability to digest food leading to diarrhea, loose stools, excessive malodorous gas, cramping, urgency of bowel movements, leakage, floating stools, greasy sheen on toilet water surface. Malabsorption and weight weight loss result and it has a significant impact on quality of life.

The condition is treated by Pancreatic Enzymes Replacement Therapy (PERT). In the US, there are five Rx brands (Creon, Zenpep, Viokace, Pertzye and Pancreaze. A physician will suggest a starting dosage on the number to take for a meal or a substantial snack. In most patients, they will need to optimize the dosage and this is is now more easily accomplished using an on-line dosing calculator at https://digestthis.ca.

The different brand of enzymes do not always perform exactly the same in a single patient. This is due to differences in manufacturing processes. If the desired results are not achieved with a specific brand, the manufacturers and registered dietitians suggest evaluating another brand. Capsules are to be taken with a meal, not before as the enzymes have a limited time of activity. When multiple capsules are required, they are to be taken staggered through the meal.

I went through all the symptoms you described after my Whipple as I was not prescribed a pancrealipase. Eventually I figured out what was going on and advocated for a Rx pancrealipase. The effects for me were immediate. It ameliorated all the symptoms. No more urgency, no leakage, stopped the malabsorption and I gained weight and it stabilized at a healthy BMI. If you were prescribed a pancrealipase, then it is likely ineffective and another brand should be evaluated.

Pancreatic Enzymes
https://www.healthcentral.com/article/digestive-enzymes
https://letswinpc.org/managing-pancreatic-cancer/2019/10/09/pancreatic-enzymes-explained/

There are three regimens that can be used in those possessing a germline or somatic BRCA mutation. Each contains a platin agent-either oxaliplatin or cis-platin. If a patient shows sensitivity to a platin agent, it many cases a PARPi will be effective as a maintenance monotherapy following chemotherapy.

I was the first US pancreatic cancer patient to enroll in a PARPi trial in 2014 for Rucaparib (Rubraca) for metastatic disease. This drug in my case was highly effective. It needs to be mentioned that I did far more Folfirinox and at full strength to knock out the possibility of minimal residual disease. Because I have the germline form of the mutation, I have a lifetime slight increased risk of developing a new primary pancreatic cancer as well as prostate and Mail breast cancers.

Although I am a 12 year survivor and have been declared cured, I have remained on the PARPi as clinicians do not have an answer as to whether I should stop monotherapy. It is being debated and I know of one participant in the POLO trial who had a somatic mutation that has recently been taken off Rubraca after five years. She still has frequent surveillance. With a somatic mutation, it is restricted only to tumor cells unlike germline which is in every cell of the body. Her risk is significantly less as the source of the mutation that drove her cancer is eliminated.

KRAS G12D-does anyone know of a an inhibitor or other therapy in research for this mutation when one does not have BRCA mutations? It is found in 97% of pancreatic patients and is often the only one found.

There are various drugs targeting various branches of the RAS pathways (e.g. KRAS, NRAS, etc)

Within the KRAS family some are now targeting multiple sub-branches, so you might see them referred to with an "X" where something like KRAS G12X might include G12C and G12D, or maybe as a "RAS-MULTI(ON) inhibitor."

Elicio Therapeutics has two: https://elicio.com/pipeline/eli-002/

ELI-002 (targets KRAS G12D, KRAS G12R, NRAS G12D, NRAS G12R)
https://clinicaltrials.gov/study/NCT04853017 (AMPLIFY-201)

ELI-002 7P (targets 7 K(N)NRAS types: G12D, G12R, G12V, G12A, G12C, G12S, G13D)
https://clinicaltrials.gov/study/NCT05726864 (AMPLIFY-7P)

Revolution Medicines also appears to have two: https://www.revmed.com/pipeline/
RMC-6236 https://clinicaltrials.gov/study/NCT05379985
RMC-9805 https://clinicaltrials.gov/study/NCT06040541

Some more discussion here: https://connect.mayoclinic.org/discussion/promising-news-on-targeting-kras-g12d-mutations/

Noted in that thread that 97% is a bit high;

"K-Ras mutations are extremely common in pancreatic cancer, explaining 90% of cases. Nearly half of all pancreatic cancers are caused by K-Ras-G12D"

The ELI-002 pipeline link contains, "Seven KRAS driver mutations are present in 25% of all solid tumor cancers and are found in 88% of pancreatic ductal adenocarcinoma (PDAC) cases." I think those are the seven (G12D, G12R, G12V, G12A, G12C, G12S, G13D) targeted in the AMPLIFY-7P trial.

Thank you! I had a spot in the Revolution Medicine 9805 trial but lost it due to not enough “measurable disease”. I am told it is the most favorable just now. Was hoping there was something available outside of trials. Always looking and preparing for the reoccurrence.

Hello all.

I am an old guy from KS and single. So a little about why I am here and information I am looking for, I am really new to this. I am in the hospital waiting to have an Endoscopy done to open my pancreas ducts. I had a colonoscopy done last November with an endoscopy. I started having trouble after that and a few months ago was diagnosed with pancreatic enzyme deficiency. Ask doctors to check my pancreas but they blew me off on many occasions. Last Thursday I came to the ER for an INR of 9.0. I had blown all the vitamin K out of my system and pegged my INR. That went down with an IV of V K to 1.1. My range is 2-3. Blood work from ER Doctor came back with a bilirubin of 12. That has been going up by 2 each day I have been here. Seem the right side of my pancreas is enlarged. And the pressure has closed the ducts. I have been on pancreas enzyme replacement meds for several months. I could not get doctors to look at my pancreas until now. They did an ultrasound and cat scan. And there is a fiber's growth in the right (my) side or head of the pancreas that is pushing on the ducts. They are proceeding as everything seems to indicate it is cancer. Oncologist is being called in and I will find out when I go see them later. Another endoscopy will be scheduled for an ultrasound of the growth and then there will be a biopsy done to nail the lid down tight. So this is in the head not the tail and I have read it is not at a place that is operable. Really don't know much now. I have read that this cancer can go really fast. Just looking to fine some information on what to expect. Radiation? Chemo? Is any of those worth the side effects having done? How much time do I have to get things ready for leaving. What are the bad things that are ahead? Any info will help. Thanks.