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Dad getting diagnosed.

Pancreatic Cancer | Last Active: Jul 9, 2025 | Replies (13)

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Profile picture for stageivsurvivor @stageivsurvivor

As @joiedevivre mentions, it is too early to start making guesses as to outcome. I am here 13 years after being rushed to have a Whipple as micrometastatic disease went undetected. It wasn’t the Whipple that cured me but very aggressive chemotherapy using Folfirinox well beyond what is given for Standard of Care.

There are patients who have gone on to become long-term survivors-even considered cured who were never eligible for surgery. Do a search for stories and videos on Camille Moses and how her patient advocacy resulted in also being a 13 years survivor. Also look for the blog by Davi D’Agostino. She is a 7.5 year stage IV survivor. Both are close friends of mine that I have frequent contact with.

Key elements of our multi-year survival stories is we advocated for more aggressive treatment, found highly experienced oncologists willing to work with us to achieve our goals and were treated at top NCI Centers of Excellence. This is not a cancer to be treated at a community hospital or regional medical center. It requires a multidisciplinary team approach and that is found at high volume comprehensive cancer centers.

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Replies to "As @joiedevivre mentions, it is too early to start making guesses as to outcome. I am..."

@stageivsurvivor thank you again. I went to read up about Camille and Davi; and I send the links to my husband. He's just completed Day 14 of the 25 sessions of VMAT with Capecitabine (to tackle the localised recurrence). There's weight loss - bloating, reflux, nausea and loss of appetite. With that comes fatigue. Staying optimistic and positive is the challenge.