Pancreatic Cancer Group: Introduce yourself and connect with others

Hi, I had a distal pancreatectomy and splenectomy for an IPMN. There was an adenocarcinoma that was removed. I am stage 1b and had my first Folferinox chemo on September 14. Digestive system is out of whack. Trying to get back regular.

My mother is the one with pancreatic cancer - I am her primary caregiver. She doesn't engage online but I do. My mom is 92 years old with prior open heart surgery. The doctor diagnosed her with a pancreatic tumor, and although he didn't give the exact stage, he said it was early because it had not metastasized and he thought she had a year to live, probably because of her age. I'm wondering what to expect as this disease progresses. She is post-hospital 5 days - they put an untreated stent in her to open the bile duct. She is still slightly nauseated but her jaundice is about gone and her itching has stopped. She has several of us kids that she will live with and we can provide great care for her. Can anyone tell me what to expect next, and then next, and then next? And when, and then when, and then when? I know she will be candid with me if she starts experiencing pain, but I don't know much about how quickly the cancer progresses. Anyone with some insight?

@aprilg
You've already identified the key to sustaining the battle, HOPE. Without hope, all is lost. My wife, with my unrelenting hope and support battled pancan for 3 years. At the end of August we went to the ER to get admitted because she had an intestinal blockage and needed to start IV nutrition. After getting a new CT scan, the hospitalist comes in and says there's nothing we can do, go home, we'll get you started with hospice. I physically removed him from the room and screamed right in his face to never come back. Until that moment, we certainly had our doubts but never succumbed to them. We did get admitted by our oncologist and she rallied when TPN started. Halfway through our 11 day stay, who shows up but Dr death and he orders the TPN stopped. It took 2 shift changes for a sympathetic charge nurse to ignore the Drs orders and she restarted the TPN. This process repeated itself 2 more when my wife decided to give up. Without hope there's no survival. My wife passed on 9/14 fighting to the last moment.

Hi~
I am trying to connect to the Pancreatic Cancer Support Group, which is scheduled for now, but it just says it is waiting for the host to start the meeting. I'm not sure if it is cancelled or if there is a problem on my end. I Zoomed yesterday and it was working fine.
Any tips?
Thank you~
Peggy

@dramagrandma1
I wouldn’t say I’m patient, I just didn’t take it seriously in the beginning. I’m not even mad at anyone about it. It was my decision not to push for quicker action. Now, things are addressed a lot quicker. :- ) Thanks for your response.

Hi - My name is Kim and I'm here for my mom. After two months of tests and 2 inconclusive biopsies with a third conclusive (finally!!) biopsy, Mom has been diagnosed with adenosquamous pancreatic cancer. It hasn't spread outside the pancreas but it is abutting two arteries (veins?) which is concerning. Plus we know she has an aggressive variant of pancreatic cancer so we know we have along, tough road ahead - and we learn more about it every. single. day. Mom is a strong, amazing lady and my dad and I will be by her side helping her every step of the way. Anyway, Mom is about to start chemotherapy rounds of Folfirinox this week. So my biggest question at the moment (I'm sure I'll have tons more very soon) is 1) what types of side affects she should expect after chemo treatments and 2) what we can do to help ease any of the symptoms - ie, certain foods that will relieve the nausea, etc. If anyone has any suggestions, I'd appreciate it. Thanks so much in advance. And peace, love and light to all.

you are a trooper; you are a "patient" patient.
i woulda' coulda' yelled to get things going faster, not that it would have done any good. just hang in there. bet

@aprilg
You've already identified the key to sustaining the battle, HOPE. Without hope, all is lost. My wife, with my unrelenting hope and support battled pancan for 3 years. At the end of August we went to the ER to get admitted because she had an intestinal blockage and needed to start IV nutrition. After getting a new CT scan, the hospitalist comes in and says there's nothing we can do, go home, we'll get you started with hospice. I physically removed him from the room and screamed right in his face to never come back. Until that moment, we certainly had our doubts but never succumbed to them. We did get admitted by our oncologist and she rallied when TPN started. Halfway through our 11 day stay, who shows up but Dr death and he orders the TPN stopped. It took 2 shift changes for a sympathetic charge nurse to ignore the Drs orders and she restarted the TPN. This process repeated itself 2 more when my wife decided to give up. Without hope there's no survival. My wife passed on 9/14 fighting to the last moment.

Apologies about the length, I didn’t realize how much I have gone through until I wrote it down!

I live in a very rural community so access to docs isn’t the quickest or easiest. And this is a most entertaining journey I wish I never had to take.
My story… I joined Weight watchers in 2020 with the intent of losing 50 pounds in a healthy way and keep it off. It was exceptionally easy for me to lose the weight but since it was no more than half a pound a week there was no concern. About 6 months in I started having a pain in the middle of my abdomen after I ate. My husband, who lost his mom at my age to colon cancer, became insistent that I see a doc. Since I live close to the middle of nowhere, the referral my local doc provided for a colonoscopy took 9 months to even get me an appt. I wasn’t concerned since noone in my family has had cancer and I have no experience with cancer. The GI doc I finally saw told me my pain was just muscular but he would go ahead and do a colonoscopy. Three months later as I’m coming to from the colonoscopy the GI doc tells me all was good but if I really want we can do a CT scan. I’m like d’uh, I wanna know why I’m hurting after I eat. Fast forward to March 17, 2022, 20 minutes after my CT scan I get a call. They found something and want to do a biopsy. I’m clueless, but hubby heard the conversation and lost all color.
Turns out I had a nice little tumor. Well, small tumor but it was/is very intimate with several arteries and a few veins. The only place in the state that does the EUS biopsy is 5 hours away. Not a big deal but they would not return my calls to make an appt (They finally did after I started chemo.) The GI dept called the following Monday and went ahead with a referral to oncology without the biopsy. As luck would have it, hubby’s sister works at University of Washington Medical Center and they got me in a week later. The EUS confirmed it was malignant, and we met with the Seattle Cancer Care Alliance on April 1, 2022. Oh what a fun meeting THAT was! The oncologist kept texting his wife during our appt and pretty much told me to live my life as much as possible and gave me enough oxycodone to kill a horse, even though I told him I didn’t hurt enough for pain meds that strong. He said I didn’t need to meet with the surgical oncologist because there was too much vascular involvement for surgery. We insisted anyway and thankfully, the surgical oncologist was amazing. He used colored pens (I’m very visual) to draw out what the problem was and why nothing could be done AT THIS TIME. Three little words that give hope. You never realize how big a word HOPE is until you need it. The next step was getting into oncology at the closest clinic. Working on two weeks from GI referring me to oncolgy and them not returning calls, the SCCA ended up calling one of the docs in the local oncology clinic and had me hooked up the following week.
Wait… It gets better. There is a huge turnaround for docs in the oncology department. They hooked me up with a medical oncologist who seemed great! Well, sadly, not so much. She was rightfully requested to leave by the hospital after I saw her a couple of times. Turns out she never listened to any of her patients. That was back in April/May. I have only seen a PA since then. They have a tumor board and all that reviews cases each week I guess but she is great and helps any way she can. After we finally started chemo (FOLFIRINOX) we decided to look for a second opinion on treatment. Then we met Dr. Truty. That’s been it’s own little whirlwind, but at least we are still on that wave of HOPE. Mayo has been amazing with answering my questions and squeezing me in to last minute appts.
I have handled the last ten rounds of chemo well. With the 11th I just finished we removed the Oxaliplatin because I began to notice some light neuropathy. I have responded well enough that the tumor has shrunk and my CA19-9s have dropped from 1488 on April 1st to 99 September 20th. Hubby has been home since we found it and has helped me through the exhaustion from chemo, among the other myriad of issues that come with it. I still work when I feel up to it (desk job so it is mostly paperwork) which is a nice distraction.
Currently, we are continuing chemo until I return to Mayo Rochester in Nov to restage. :- ) HOPE!