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.

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?

@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.

Tumor size is 3.3 cm. Had shrunk from chemo (Gem&Abax) about 25% at first but second CT scan it remained the same. Radiation is recommended next. In researching radiation have been reading lots of good things about Proton radiation which is supposed to be less harsh on surrounding organs, however, because its isn’t widely available info on people who have had it is hard to find. Thank you for sharing your experiences. Arlene

@gamaryanne May I ask what chemo regime you are on? I assume you are still on a regime.

@dantina777
My surgery has been done by Dr Eddie Abdalla. He is very skilled with the DaVinci system and also conservative when approaching surgery for the best outcomes. I highly recommend him.

Hello everyone. My name is Jerold. I was diagnosed with Acinar cell carcinoma stage 4 incurable pancreatic cancer in 2022. I was on chemo every other week along with a pump that stayed connected for 2 days. I responded well to the chemo and after 2 years my surgeon suggested we go forward with the whipple procedure. That was performed late July and took nearly 11 hours. I am finally feeling like I’m breaking free from the fatigue. My appetite is still low because of cramping is dumping. I am currently on the highest dose of Zenpep. It has made a difference but it’s not perfect. It’s a long road but it beats the alternative. I was not recommended any more chemo and my ct scan looked good. Next even in 3 months. Fingers crossed. Also I have a wonderful team.