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Decided not to have surgery. What’s next?

Pancreatic Cancer | Last Active: May 5 11:48pm | Replies (44)

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@wjk

@drhmch
Doug - Like you, my wife and I are searching for alternative treatments, although my history is different.
I was diagnosed Stage 1 Pancreatic Adenocarcinoma at the head of my pancreas one year ago. Following diagnosis I travelled from Alaska to Mayo/Rochester for additional testing, bile duct stent replacement, and exploratory abdominal laparoscopy with peritoneal wash. My CA 19.9 was about 650. Beginning early June I began a planned 8 cycles of Folfirinox. My severe reaction to Oxaliplatin during my 4th cycle, ended chemo with Folfirinox. My CA 19.9 levels fell to a low of 43.... so Folfirinox was working. Within a week or two I then had to have a 3rd ERCP and have my common bile duct repaired/covered. I then had 3 cycles of Gemcitabine/Abraxane (no Cisplatin) before returning to Mayo for 3 weeks of radiation treatments. The Gem/Abrax treatments preceding radiation were not as effective as the earlier Folfirinox chemo. Following completion of radiation in early December I was scheduled for a modified laparoscopic in January, However, though my imaging looked very good, my surgery was postponed for a month due to elevated CA 19.9 (169). I returned to Mayo in late February but the CA 19.9 was still elevated (171). I was given the option of going ahead with surgery at that time or resume Fulfirinox without Oxaliplatin for two months. We elected the chemo option and returned to Mayo yet again to find out that though PET and CT imaging results were still good, the cancer had metastasized to the liver (several small lesions, all less than 1cm in size) and CA 19.8 levels had risen from 171 to 747 in 8 weeks. Surgery is now off the table, as is further radiation treatment. The Gemcitabine/Abraxane chemo option is there, but it was not effective earlier. My prognosis now is very poor (life expectancy per the oncologist is 4-6 months).
What to do? we are looking at alternative therapies but most to me seem unlikely to be helpful, much less curative. I'm open to suggestions from one and all as we search for new ways to beat this nasty aggressive disease. My wife thinks we can slow the metastasis through diet and nutrition as she diligently pours over a variety of literature looking for help/answers,
I'm glad this thread is back in play Thanks Doug and Marcia for reengaging. Hoping to hear more from the both of you... and others. Warren

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Replies to "@drhmch Doug - Like you, my wife and I are searching for alternative treatments, although my..."

So sorry to hear that Warren. I don’t knows why but my CA19-9 has been in good range since I started folfirinox last year. They stopped the irinatican right away because my throat started to close. It’s nice to chat with others that are going through the same things.

After you were initially diagnosed stage 1, why didn’t you get a Whipple surgery immediately after diagnosis before the cancer spread?