Pancreatic Cancer Group: Introduce yourself and connect with others

mae,

A center of excellence should be able to quickly stage your disease, and will, likely prescribe neoadjuvant CHT/CRT, prior to surgery.

Your courage is a miracle. Thank you for sharing your very difficult story. I hope you will continue to feel normal and live each day well.

I am glad you are feeling well after all you have been through.
It would be even harder on you and your family if you were suffering. I never stop praying for more good time while they find more ways to combat this disease. The current reality is always in our minds. God Bless.

The doctor here says somewhere between 1 and 3. Listening to the other people here and my personal friend and other sources and factors, I decided to go to MD Anderson. I will ask them to operate on me, not just give a second opinion.

I’m feeling well, except for a little discomfort on my right side under my rib. I walk a mile every day that weather permits and take Creon before I eat a meal.
My surgeon said that my pancreatic cancer was carcinomatosis and that chemo would only give me about four more months ( he said I had about six to eight months). The PET scan and CT scans did not show the carcinomatosis. He found it when he went in to do the Whipple. He didn’t do the Whipple and left the tumor. He took six inches of my intestine and did a bypass around the pancreas so I would be able to digest food. Chemo made me sick and I don’t want to feel miserable if it’s not going to help me.
I feel sad when I think of what has happened to me and my family—it’s seems surreal that I feel normal, but knowing that my time is near. I am in God’s hands and pray for a miracle 🙏

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.