Celebrating Life after Pancreatic Cancer!

I was diagnosed with Pancreatic cancer on March 15, 2024. I was jaundiced and fatigued. The doctors performed surgery to put a stint in the bile duct and discovered a small tumor in the head of the pancreas.
I had 7 sessions of chemo, Whipple surgery, and 5 more rounds of chemo. Rang the bell and was ready to get back to a normal life.
Three months later, I had my first CT scan which showed the cancer returned with a vengeance. My CA 19-9 was in the thousands. I was told by my doctor if the chemo worked, I’d have no longer than a year to live. She dashed away all hope and optimism for a future. My family and I are devastated, sad, and angry.
It is so very difficult to dig our way out of this hole of despair and darkness to find joy but we must. I will not and cannot live with whatever time I have left in sorrow and pity. Even though this was the worst year of my life, it was also my best. I have been enveloped by an amazing support group of family and friends who have shown me so much love and compassion.
Having a death sentence is both good and bad. I can get legal things in order and help my love ones prepare for my passing. It’s the insidious things that hit me in the face. The realization I don’t need to renew my subscriptions, or wondering what will happen on my favorite shows, things so minor that seem so unfair. I’m angry I’ll be missing out on life that will go on without me.
When I fall back into my hole, I will come to this site to help me get through my grief. What I’m hoping to find are people who are going through the same emotions and experiences I’m going through. Misery does love company on this journey of life and death.

Get a new doctor. There are so many survivors that I have read about with situations similar to yours. Please don't give up. I am reading a book now that presents attitude, exercise, meditation, and other helps that YOU have control over. (Ian Gawler, "You Can Conquer Cancer"). It has helped me immensely (peritoneal carcinomatosis), both with prolonging life and enjoying life. But I know how you feel--it has been 2 1/2 years since my diagnosis with pancreatic cancer (now metastasized), some chemo and the Whipple. I repeat to myself--"I am so fortunate to have a profound sense of wellbeing." I'm so glad you are appreciative of what you have--that will make a huge difference in your survival--please hope. Courage, Carrie

"I was told by my doctor if the chemo worked, I’d have no longer than a year to live. She dashed away all hope and optimism for a future. My family and I are devastated, sad, and angry."

Don't let that prognosis be your benchmark! My tumor also returned with a vengeance 4 months after Whipple, but then remained quite stable for 2 years on chemo.

It grew again with a vengeance during my 4-month break for a clinical trial, but stabilized again for another 6 months or so before my CA19-9 started climbing again. It seems to be a sign of drug resistance at this point, but I won't know for sure until the next ctDNA test and scans next month.

Your condition (and mine) obviously change a perspective and help put priorities in order, but don't define an actual endpoint. I was in pretty bad shape last October, but now have the time and energy to resume my search for better drugs and clinical trials, as well as buying tickets to some future events that I want to live long enough to attend. 🙂

I wish you all the best in finding joy and good treatment, as well as for tolerating your chemo.

I was diagnosed with Pancreatic cancer on March 15, 2024. I was jaundiced and fatigued. The doctors performed surgery to put a stint in the bile duct and discovered a small tumor in the head of the pancreas.
I had 7 sessions of chemo, Whipple surgery, and 5 more rounds of chemo. Rang the bell and was ready to get back to a normal life.
Three months later, I had my first CT scan which showed the cancer returned with a vengeance. My CA 19-9 was in the thousands. I was told by my doctor if the chemo worked, I’d have no longer than a year to live. She dashed away all hope and optimism for a future. My family and I are devastated, sad, and angry.
It is so very difficult to dig our way out of this hole of despair and darkness to find joy but we must. I will not and cannot live with whatever time I have left in sorrow and pity. Even though this was the worst year of my life, it was also my best. I have been enveloped by an amazing support group of family and friends who have shown me so much love and compassion.
Having a death sentence is both good and bad. I can get legal things in order and help my love ones prepare for my passing. It’s the insidious things that hit me in the face. The realization I don’t need to renew my subscriptions, or wondering what will happen on my favorite shows, things so minor that seem so unfair. I’m angry I’ll be missing out on life that will go on without me.
When I fall back into my hole, I will come to this site to help me get through my grief. What I’m hoping to find are people who are going through the same emotions and experiences I’m going through. Misery does love company on this journey of life and death.

@markymarkfl What is your chemo type and frequency that you have been on for 2 years? I just started gemzar/abraxane and had to push the second infusion due to low blood counts.
I had folfirinox in 2022. So I may not be working with the same foundation as you. Thanks!

Thank you for your words of encouragement and support. Where have you gone to find clinical trials?

Hi. I was first diagnosed in Sept. 2024. My tumor is in the tail and the body of the pancreas. It was. 7.2 cm long. The cancer is encased in the celiac axis which has hundreds of nerve endings. I am inoperable and have a limited time to live. After 2 scans the tumor has shrunk .67 inches. I am in palliative care and my next step is hospice. I was on 2 chemos. Gemzar and Abraxane. They stopped the Abraxane because I wasn't having a great quality of life. I had intense bone pain, flu like sympoms x 5. I was exhausted 4 days out of the week. I am now off the Abraxane for about a 5 weeks now. Right now I am tired at the end of day and sometimes I have a hard time trying to focus. I am considered a stage 4. My doctor told me that I will not survive this disease but will not tell me how long I have. I have come to terms with this but my husband feels I am going to survive this. I feel for you and I will pray for you. I am so sad for us both.

My starting point to search for trials is usually https://clinicaltrials.gov/ but there are other good ones.

I often just check the websites of prominent institutions where I could realistically travel by car (on straight interstates with tolerable traffic) or easy, affordable non-stop flights. From Central Florida, the former are mainly Moffitt and Mayo, with the latter including Houston, Atlanta, Baltimore, NYC, and Boston.

My trial was at MD Anderson, requiring me to spend 5 weeks in Houston.

It's important to speak to a human at your target institution / trial location as soon as possible. They often ghost people who send emails or leave voicemail. It helps to be "in their system," which means you've actually seen an oncologist (at least for a one-time consultation or second opinion) at that site, so you'll have an advocate with inside connections willing to refer you to the actual research coordinators conducting the trial.