← Return to FDA approves new first line treatment option for metastatic pancreatic

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@robee

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.

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Replies to "I am also stage IV and was diagnosed almost 2 yrs ago. I went 22 treatments..."

Ditto the research commenters have done so far in helping us understand this new chemotherapy. I’m wondering @robee when you said you had G|A; does that mean you didn’t receive the cis? I’ve had 4 treatments so far and I’ve had my hair fall out, sensitive digestion (avoid spicy food and/or eating too much per meal is the remedy for me), and extreme nausea. I had 5FU post surgery last year and didn’t have any symptoms except hair thinning and some nausea for about 2-3 days however my cancer metastasized about 4.5 months after I completed my 12 cycles of 5FU. I’m 66 years old. I mention age since it appears to me from reading postings that age (and obviously health status) correlates with one’s ability to handle chemo. I ask about the cisplatin because it seems to be one of the ingredients that my cancer is slowly responding to. Obviously the type of mutations you have ate also relevant so I’ll mention that you have an atm like mutation and the TP53. I don’t see any postings from others about TP53 and mention it because I believe it’s one of the real buggar mutations that makes complete recovery a challenge.