Pancreatic Cancer Group: Introduce yourself and connect with others

I'm catching up on this discussion thread. I have to agree with @mamarina, the experiences you share with each other really is information that one just can't find anywhere else.

Here's a check-in for some members on chemo. I want to hear how you're doing:
@dragonfly1, how are you doing? Are you continuing with chemo?
@irvinejr, how is chemo going? What chemo regimen are you taking?
@mdbray, are you continuing with chemo or immunotherapy?
@mmcgmayo1, how are you doing with your treatment plan?

@maedanosetchan, if you would like to seek a second opinion at Mayo Clinic, here's how to get started: http://mayocl.in/1mtmR63

@richhsu, there isn't an app, per se. But you can bookmark the website https://connect.mayoclinic.org/ and see your notifications onsite in the upper right.

Thank you for sharing your story. My own experience is that difficult emotions go with the diagnosis of pancreatic cancer. I just had my 6th chemo today. The first with FOLFIRINOX sent me to the hospital. I told my doctor if there wasn't a way to change the treatment I would rather die than keep getting it. I am now getting FOLFOX and it is quite manageable. I saw an oncologist at Memorial Sloan Kettering to review the chemo (I have BRCA 1 gene) as well as the surgeon and the verdict was that the chemo I was taking was working just fine. I was greatly relieved as the FOLFOX (FOLFIRINOX minus irenotecan) has been going nicely for me so I don't need to adjust to something else. If you are a candidate for surgery at this time you can discuss the issues with discharge planning and rehab with the surgeon, could be someone in the office addresses the issues of post hospital care. My mother, age 95, had a pacemaker and we did not advocate hard enough for her to go to rehab instead of home, she spent a month private pay in an assisted living facility to get the care she needed. Stick to your guns about rehab, if the care which is needed seems beyond the ability of a family member to provide, stand up for yourself and say so. Based on the experiences of my family members and the care of my mom, it seemed like the staff were only too quick to try and shift responsibility to family.

Hello Marcia K, I am from Denver area. I had my surgery in late May 2021. I had a great surgeon, Dr. Del Chiaro, at UC Health Anschutz in Denver. They would not release me from the hospital until I was very stable and my husband was able to assist me. I don't know about your situation, but I do believe the doctors do not let people go home until they are medically stable and ready.

And the journey continues. I had my Whipple in June of 2014 followed by 6 months of gemzar. Because of a rare reaction to the chemo, I lost 85% of my kidney function. When I was cancer free for 5 years, I qualified for a kidney transplant. I was accepted on the transplant list at Mayo and at Nebraska Medicine. My sister offered to be a donor. Just weeks before her testing began, she was diagnosed with mantel cell lymphoma and I lost my donor. (She died a little over a year ago.) In December of 2019, my cancer came back in the surgery bed. I was immediately removed from the transplant lists. I then went through 25 rounds of radiation. PET scans in the last year indicated that the tumors were shrinking. Last month, I mentioned to my nephrologist that I was always tired. She thought I needed to start dialysis. Before she made the final decision, she wanted me to see a cardiologist to verify that my heart was fine and was not the cause of my fatigue. Through the testing process for my heart, it was discovered that I have coronary artery disease and a chest X-ray showed new spots in my lungs. Doctors then scheduled a CT scan of my lungs. Looking at the results of that test, they suspect that my cancer has metastasized to my lungs. Heading for Mayo tomorrow for more testing. Without faith in God, I would have given up long ago. But I will continue to hope and will continue to fight because my life is in God's hands. Never Ever Give Up.

Hello
I was diagnosed October 2022. I went to the er with jaundice and got my MyChart results at 2am. Pancreatic cancer. That was very disturbing. I thought it was my liver. Eventually they did an EUS and MRCP. They placed a stent and sent me home. The day I was supposed to start chemo I woke up with a temp of 102. I was admitted to the hospital and after a week they removed my gallbladder.
Just had my 6th chemo and feel awful. I’m supposed to go to Mayo on Tuesday to see if I’m ready for the Whipple. I was feeling optimistic but now feel sad. I’m worried about the recovery from surgery. What is that like? Do I need a nurse to come in or go to a rehabilitation center? My husband is afraid he won’t know what to do to help me.

Hi everyone! My mom receive the diagnosed with borderline pancreatic cancer. It is located in the "neck" of the pancreas, between the head and the body. The size is 32 x 28 mm. She was considered eligible for robotic surgery, but the CA-19 levels was very high - 19090,0 U/ml, but they found no evidence of metastasis. Thus, the doctors recommended starting her treatment with neoadjuvant chemotherapy with Folfurinox. I'm so scared with her CA-19 levels. Please, can anyone share some information about that or similar results to hers?

Thank you for sharing your story, seems like you have been amazingly persistent! Admire your determination to find the best care.

mae,

Can you provide more information?
What stage and was the tumor described as resectable or not?
Where is tumor, how large, what about biopsy?
CT scan specific results?
PET scan specific results?

IMO, go to a major center - my decision point is whether or not they do laparoscopic Whipple surgery - if they don't I would go elsewhere - and, quickly.

My understanding is that neoadjuvant chemo (CHT) and chemo augmented radiation (CRT) is appropriate in most resectable and borderline resectable circumstances.

My opinion is definitely get a second opinion, in my case I got 2. At this point I have an 8mm dilated main pancreatic duct. I am monitored every 6 months. Have had this for 9 years. The more opinions the better you are able to make the right decision.