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@markymarkfl

@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!

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Replies to "@spongybob , 61 years old here... After 6 months (12 rounds) of Folfirinox, my Whipple and..."

Thanks for your story.
I know this all sucks for everyone and in different ways. I know personally that any new chemo that makes me feel anything like Folfirinox, is not on the table for me. Besides getting infections and being hospitalized three times over 12 cycles, I can't say I have ever felt that bad in my entire life. Worse than that, I could see the hurt in the eyes of my loved ones when they see me. The good news is I feel great today and I'm here!

Hello markymarkfl,
Thank you for the information you provide to all of us, it is so helpful! Regarding the clinical trial, how are you doing these days? Are you out of hospital now? My oncologist did verify that my kidneys are working better than average, but did confirm what you wrote earlier that sometimes abraxane can lower kidney function so thanks for that heads up! I continue to pray for you and all others on this board.

Hello,
It seems I am on a similar path as yours. I could not do the Whipple though because the tumor was wrapped around blood vessels. So now I’ve metastasized to my lungs so I’m stage four as well. Back to chemo doing Gem Abraxane. I’m not handling it well at all. High fevers, vomiting diarrhea. End up in the hospital for four days and then the next time went to ER with a high temp and pneumonia.
I opted out of this weeks chemo to give my body a break. Feeling more energetic. I’m anxious to talk to my oncologist on July 1 when I go in for chemo next time. Hopefully she’ll have some answers and some thing that I can tolerate better.