Pancreatic Cancer Group: Introduce yourself and connect with others

@tjk that is a great story. Do you mind sharing what your mutations were? The old wanna-be researcher in me is looking for survivors that share my KRAS12D and TP53 mutations. My reading research has shown that if you’re a cancer cell, these 2 work very well together in your favor. My next step, for future use, is to find a clinical trial that addresses these 2 mutations.

March 28th 2021
Started stage 4, later reconsidered was 3.
Had chemo, radiation& wippel surgery. Just went from 3 month scans to 6. I have no markers so the scan is the only way of cking. I am feel extremely lucky since all is well. Except for the usual digestive issues due to the whipple etc I am doing well.

Has any one found an alternative to Creon?

I have taken Zenpep. There are, I think, several other FDA approved alternatives.

Hello @highlea and welcome to Mayo Connect. I appreciate hearing of your good response to treatment for pancreatic cancer. As you were originally diagnosed in 2021 you seem to have done well with the treatments provided.

You say that you have digestive issues due to the Whipple. How are you managing those issues currently?

There are five Rx pancrealipase products in the US with Creon being the most frequently prescribed. The others are Zenpep, Viokace, Pertzye and Pancreaze. There are many OTC brands but they are not enteric coated for timed release and the lipase enzyme activity which is the most important enzyme is significantly less than in the RX versions. The two most recommended OTC brands by Registered Dietitians are Vital Nutrients and Digest Gold.

Good morning. I'm not sure this is the right group for me, but I belong to several Mayo groups and I am impressed with the amount of support and caring I have experienced. As far as I know I do not have pancreatic cancer, but I can't find a group for other pancreatic problems. If this is not the group for me, maybe someone can redirect me.

At last week's meeting with my primary doctor, she reviewed data from my Dexcom G7 and my use of both long and short term insulin and said in simple terms that the pancreas has "given up" and essentially stopped working to control glucose levels. This concerns me and I would like to hear from people in a like situation.

Now, for more background:

I was diagnosed with acute pancreatitis in an emergency room visit a couple of years ago, several months after a six-month course of Long Covid. Diagnosis was based on symptoms and pancreatic enzyme levels that were abnormal. Lipase and amylase levels were wrong with one high and one low, but I don't remember which was which at this point. I was referred to GI and told to eliminate all beef, lamb and pork from my diet, along with greasy foods. The next round of blood work (after about 60 days) was better but not perfect, so I added OTC digestive enzymes. The next round of pancreatic enzyme tests were fine and all subsequent tests were fine. I added lean pork back to the diet with no problems because I was tired of just chicken, turkey, and fish. My primary doctor was fine with the addition of OTC digestive enzymes.

I am 71 with a 56 year history of IBS and a 35 year history of diabetes. IBS is different for everyone, in my opinion, and in my case I cannot eat most vegetables or beans without immediate issues. After 56 years with this, I know what to eat and what not to eat for my specific body situation

After managing diabetes with prescription pills for many years with up and down results, my primary suggested diabetic injectables. We tried Victoza, Bydureon, and Ozempic. At the preferred (highest) level of each drug, I had various IBS issues and with Ozempic at the upper level, I developed cardiac issues (a rare side effect, but I developed it). My cardiologist suggested stopping the Ozempic completely, and all cardiac symptoms went away in 8 to 10 days. The primary doctor suggested long-term insulin at night, but my Dexcom G7 was still showing big spikes during the day with highs and lows for sugar, so the endo doc added short term insulin. That has helped considerably, smoothing out the big peaks and valleys to where my 14 day average now show as about 150 throughout the course of the day with me in the green zone 70 percent of the time.

I've read that a pancreas can just stop working. Apparently, this may be called pancreatic insufficiency or chronic pancreatitis (versus the acute I was diagnosed with) although my doctor did not say that.

Does any of this make sense to anyone and is there a group here at Mayo that deals with a chronic or acute or non-working pancreas? I don't want to bother the readers dealing with pancreatic cancer with my far less important issues (at least less important in my mind than cancer). I'm so sorry that you are dealing with cancer when I am only dealing with something that I seem to be able to control with glucose management, diet, and exercise, although I do not consider my quality of life to be as good as it was in previous years.

Thank you to anyone who has read this far and would like to respond.

Frank

@gamaryanne Hi came across your post. Who did your pancreadectomy and liver resection if you dont mind? thanks!

I am a caregiver for my husband that was diagnosed with stage 3 pancreatic adenocarcinoma located in neck of pancreas but wrapped around his mesenteric artery making him ineligible for surgery. He has had 18 chemo treatments which has taken his pain away and has done well in management of side effects. After 3 more chemo treatments he is scheduled for SBRT radiation therapy. We are struggling whether it makes sense to get a second opinion on radiation treatment to see if he would qualify for Proton radiation (suppose to be fewer side effects). We would have to travel to a center offering, so would like to hear from anyone that has faced this decision or is facing it. Thanks for any input.

Hello rjm1942!
I believe I read that proton therapy is good for tumors rather than lesions.
What is the size of tumor your husband is dealing with?
I was able to get surgery for the tumor in the tail of my pancreas, but after my surgery and without chemo for 4 months it metastasized to the liver. I got GAC (now just GA) chemo and still am for 11 months now, which shrunk my liver lesion from 1.5cm to 0.9 cm. Another 1cm liver lesion is no longer seen on my scans and my tumor marker is in the normal range. I got the MRIdean radiation at City of Hope in Irvine with an expert in that field in order to hopefully kill that lesion which remained at 0.9cm. In early December I’ll find out if it worked (my radiation treatments (3) ended in mid-October). The radiologist recommended that I continue on chemotherapy during the course of my 3 treatments which were administered over a 2 week period. I had slight nausea and weakness during that time, but I don’t know if was from the chemo or radiation; either way the effects were very slight and I’m hoping well worth the effort. Some of your decision might be based on the size of your tumor.