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DiscussionFDA approves new first line treatment option for metastatic pancreatic
Pancreatic Cancer | Last Active: Feb 15 4:27pm | Replies (16)Comment receiving replies
Replies to "(m)Folfirinox is still the gold standard and used first in those patients age 70 or younger..."
I am also stage IV and was diagnosed almost 2 yrs ago. I went 22 treatments of Folfirinox-a few w/o ironitecan and a few w/o oxilliplatin, but most full strength. Then after a year, my blood markers started slowly creeping up. While scans showed the tumor was stable and they could no longer find the spot on my liver, I contacted MSK and received high dose radiation and went 6 mos w/o chemo and no activity from the primary tumor. Unfortunately my follow up at the 6 mos point showed a tiny spot on my liver. While MSK and my local oncologist did not necessarily feel folfirinox failed, they suggested starting G/A to throw something different at the new spot. I’ve struggled a little with the G/A and had to stop chemo for about 4-5 weeks after the initial 2 back to back treatments (due to white cell and platelets dropping, irritable colon, as well as a family trip) and my docs felt it was ok since the spot was so small. CA19s really increased -from 1200 to over 3000. But scans still showed stable disease. I am back on G/A every other week at a 20% reduced dose.
Thankful that I still have no symptoms from cancer-just from chemo. And cancer seems to still be “stable”. With G/A, I seem to get almost IBS symptoms-some sessions worse than others- and wondering if this is causing my CA-19 to go up and down (heard inflammation can do that??) has anyone else had this happen?
Plan to ask my oncologist if this new treatment is something I could try. Also looking into clinical trials, Altho my oncologist also feels going back on Folfirinox may be an option if G/A doesn’t show good results.
So grateful for everyone’s input on this site. My goal is to be one of the outliers and trying to be as aggressive as my body can withstand.
Thanks for be excellent summary! Kudos to your drs for allowing you to go beyond the standard level of care; mine wouldn’t agree to that. Just curious, did you develop the neuropathy often associated with FFX? - and how often do you get scanned and I take it you no longer receive any chemo? Also, if you don’t mind sharing, what pancreatic-related mutations did they identify? I have the KRAS12-D, atm base variant, and TP53. Wonderful that you are cancer free now, gives us all hope!
Thanks for your very detailed and helpful reply. The newer formulation is better tolerated as I understand it. After my first round of chemo with Folfirinox I thought I would rather die than take it again. Because of the BRCA1 gene, I wanted to continue with a platinum drug and was treated with Folfox. I did fine with this treatment. I went from borderline to operable and there was no evidence of active tumor in anything when I had my Whipple. My sister, who has squamous cell esophageal cancer , was tried first with a platinum combination. She showed a response and then failed. She is now getting modified liposomal irinotecan and her side effects have been pretty mild. Individual responses to treatment vary and so do side effects.
Thank you for that explanation. You answered a question I had, which was whether Nalirifox had been compared to Folfirinox (answer: no data at this point). You also explained how Onyvide (the liposomal irinotecan) works. To my totally untrained eye, I couldn't see much difference between Nalirifox and Folfirinox, and I still can't. I have an oncologist appointment tomorrow, and I'm going to ask about this. I'm doing quite well on my modified Folfiri, but I'm curious what this might mean for me. I also appreciate your comment re going beyond the standard-of-care 12 chemo cycles. I'm scheduled for cycle no. 20 next week, and we do not plan to stop.
Thanks for sharing your knowledge!