@waltsocal ,

1: I'm getting Cisplatin on top of the G+A. Just had 1 year anniversary, 27th bi-weekly treatment. It's been much easier for me than 12 rounds of Folfirinox was over my 6 months pre-Whipple.

2 & 3: The oncs told me people generally develop resistance to the drugs or too much neuropathy or low blood counts after 6-9 months. I'm still holding up well. I get CA19-9 tested before chemo every 2 weeks, an abdominal MRI, chest CT, and Signatera blood test every 2 months or so. CA19-9 dropped rapidly on GAC, from almost 700 last year to low 30's (normal range!) about 2 months ago, but it has crept up to 53 as of last week. Last MRI was the first one to actually show shrinkage of tumors, by a tiny bit. The added cisplatin might be helping me out because of the ATM mutation, but I think the Abraxane is also playing a large role, since the platinum (oxaliplatin) in my Folfirinox didn't seem to do much.

4: I can't really define stable, but two oncologists have emphasized imaging more than anything else. I think one defined "stable" as no new tumors and no growth more than 10%. CA19-9 has been mostly under control, and Signatera continues to be negative, so that's all "stable disease" on their reports.

5: I never really got over the Folfirinox fatigue until I finished, but it did always get better a week after treatment. Was living on coffee. On GAC, many factors at play, but some changes in sleep situation, reducing work-related stress, improved health of other family members, have helped. One blood transfusion, a prescription for Ritalin, and more coffee have all helped.

Two docs are pushing me to reduce the Abraxane, which might reduce fatigue even more, along with reducing neuropathy and maybe regrowing some hair and eyebrows. I'm hesitant to drop any drugs from a recipe that seems to be working, until I can get into something better by way of a clinical trial.

You could well be around for a lot longer than a year, so keep making plans for the future! Seriously, if the G+A does its job, you could actually be feeling good much of this year. If it's not controlling the cancer (soon), ask if adding cisplatin would help. I believe the GA therapy is typically 3 weeks on and one week off. I'm not sure if my GAC is every other week because of the cisplatin or because of my travel requirements, but getting a two-week break every time definitely helps with recovery, so ask if that's an option for you as well.

And be a really aggressive advocate for yourself and a non-stop researcher for clinical trials. If you develop resistance or intolerance to chemo, you'll want the backup plan to already be hatched instead of starting from scratch. Some of the clinical trial drugs are even easier to tolerate than G+A, and possibly more effective (depending on patient/genetics/etc).