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Pancreatic Cancer Group: Introduce yourself and connect with others
Pancreatic Cancer | Last Active: 14 hours ago | Replies (1283)Comment receiving replies
Hello,
I'm a 66 year old male that was diagnosed with pancreatic cancer in June 2022 when they found a biliary stricture that was due to pancreatic cancer. I was told it was caught early on and I had 8 cycles of Folfirinox, some radiation, and then a supposedly text book Whipple with clean margins and cancer showing up in only 2 of the 21 lymph nodes that were removed. I then had 4 more cycles of Folfirinox. That all ended in July of last year and I have been receiving regular blood test and feeling great. All of a sudden, my CA 19-9 kept going up and reached in the 1000's. The first CT and PET/CT scans found nothing. I then had a PET/MR that found two small liver lesions. The larger 9mm was biopsied and I was recently told that it was cancerous and similar to that which was removed with my Whipple. The Mayo (Dr. Alberts) told me that without any further treatment the average lifespan is 4 to 6 months and with treatment the average lifespan might be a year or more. I'm going to look at some of the chemo and targeted options, but if I am left with a year of life, felling anything like I felt with Folfirinox is not how I wish my remaining time to be. I would love to hear from any of you that have had the pancreatic cancer spread--particularly to the liver--and feel their extending their lives and still have a decent quality of life. How long have you been able to survive like this?
Thanks!
Replies to "Hello, I'm a 66 year old male that was diagnosed with pancreatic cancer in June 2022..."
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@spongybob ,
61 years old here... After 6 months (12 rounds) of Folfirinox, my Whipple and 22/22 nodes were declared clean, and I had no adjuvant therapy afterward. Pathology also showed a "grade 2" (medium/partial, on a scale from 1-3) of tumor treatment response to the Folfirinox. I kinda felt like that was six months of time wasted.
No evidence of disease on tests (2 Signatera, 1 Galleri) afterward, although CA19-9 started creeping up slowly. A follow-up MRI 4.5 months after Whipple revealed tumor was back (1.3 cm) at the place it was "successfully" removed. Long story short, it had also metastasized and put me in the Stage-4 camp in January 2023, ruling me out for surgery and radiation, sending me back to Camp Chemo.
Since I'd only had a grade-2 response to Folfirinox, and also had a germline ATM mutation, I started on Gemcitabine + Abraxane + Cisplatin (GAC). It was predicted to last me 6-8 months before drug resistance developed, blood counts tanked, or CIPN (chemotherapy-induced peripheral neuropathy) got bad enough to require stoppage.
16 months later, I was still feeling fine and responding mostly well to the GAC! Aside from some fatigue and nausea (never vomited) for 2-3 days after chemo, I always felt mostly normal and was back to work every Monday after each biweekly (Fridays) chemo. The complete hair loss was an obvious symptom, but acceptable. For me, the worst was the fatigue that developed over time between job stress and dropping hemoglobin (anemia). Those were managed successfully by job and life changes, caffeine, Ritalin, and a couple blood transfusions. There were minimal/increasing signs of drug resistance by about month 15. Neuropathy never got past grade 2 (moderate, but not painful or debilitating). My blood counts and kidney function are still adequate, but declining toward the lower end of normal. My biggest limitations were to vigorous exercise, but I can still do a brisk walk for 2-3 miles with no issue and do moderate work around the house. The timing was about right to stop and enter a clinical trial by May 2024.
So, in summary... Everyone is different -- different tumor response and different patient tolerance to chemo. I did not enjoy Folfirinox, but found the GAC much more tolerable and much more effective. I also know two patients (one now deceased) who had severe reactions, so I don't want to portray it as a walk in the park
The thing for you to do is search furiously to see if there is a good clinical trial you can get into before you have to resort to another "sentence" of traditional chemo. Starting a traditional chemo might disqualify you from some potentially good trials, but delaying the start of chemo for too long might allow your cancer to spread. Tough balancing act. If you do start first on a traditional chemo, keep a vigilant eye out for appropriate, realistic trials as your best future option. There are a lot of new drugs and therapies being developed that have much milder side effects than traditional chemo. Do everything you can to stay in shape as long as you can, because declining health can sometimes disqualify you from a trial. If needed, traditional chemo is just your bridge to a life-extending (-saving) trial.
Hang in there!