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Pancreatic Cancer Recurrence after Whipple

Pancreatic Cancer | Last Active: 5 days ago | Replies (114)

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Profile picture for stageivsurvivor @stageivsurvivor

@katieliz Doing better than ever! Was at the American Academy of Clinical Research (AACR) special meeting in Boston on pancreatic cancer research 9/27 to 10/1. Flew to Switzerland 10/2 for hiking in the Swiss Alps. Flew home on 10/19 and have been in Philadelphia 10/21 at the Eastern Comprehensive Oncology Group-Academy of Clinical Radiology and Imaging Network ECOG-ACRIN) semi-annual meeting. I serve on its GI Cancers Committee as a research patient advocate providing input on clinical trials development from the patient standpoint.

I have exceeded 13 years survival and considered cured. The mechanism that resulted in cure was the amount and duration of Folfirinox I was able to tolerate that caused conversion of immunologically cold tumors to immunologically hot tumors where they expressed neoantigens making them recognizable by the immune system. This led to TCR lymphocytes and CD8+ T memory cells addressing any minimal residual disease leading to cure.

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Replies to "@katieliz Doing better than ever! Was at the American Academy of Clinical Research (AACR) special meeting..."

@stageivsurvivor I definitely want to achieve long term survival, your story is inspiring! I am getting good reports right now, but it is the sneakiness of this cancer, coming back, that concerns me. I had 8 rounds of full blast fulfirinox, 5 before the Whipple, 3 after, but the dosage was lowered last cycle as my platelets were too low to continue, and so had had 6 wks of delays after the last 2 rounds, still too low after the last round with reduced chemo so again delayed. I have asked if there’s anything I can do to raise my platelet count but have been told that it just takes time. So now have 3 rounds left, hoping to get going again within the next two weeks. If you know anything I should be doing/trying, I’d appreciate it. I have been very fortunate in some ways, the cancer was stage 1, on the head of the pancreas, Whipple went well. But I want to do all I can to keep going, more than a year or two, expecting my first grandchild in February, and my first published book is coming out in 2027. Thank you