CEA and CA19-9 Results as Predictors of Treatment Outcome

Is there any way they can lower the dose of the modified Folfirinox? Originally my MD was going to give me the full dose until he realized I'm 70. He lowered the first cycle to 80 percent of the full dose, and even at that level it really laid me low with dehydration, diarrhea and nausea. Beginning with cycle 2, the dose was lowered to 60 percent of the full dose. Each cycle has gotten progressively easier in terms of side effects, appetite and even weight gain, and I now have several days at the end of each cycle where I feel pretty much like I used to before all this started.

I started out at a 50% dose because I have a DPD gene mutation that could make the 5FU toxic. Dose was ramped up to 75% for the second cycle and 100% for cycle 3 which I just completed last week. For what it’s worth I was told by the team at Mass General that data has indicated that efficacy at reduced doses has been proven to be as effective. I have not had any real issues so far. (Knock wood) Eating normal meals and haven’t lost any weight. I drink at least 48 oz of 50/50 Gatorade and water everyday to avoid dehydration. Like you, I feel back to normal after 5-6 days. I’m also 70. Good luck with continued treatments.

I wonder if there is a way to know which of the “gold standard” treatments will best work for each person? Also-do you have any mutations for which you are researching clinical trials?

Thank you for all your information, very helpful. My husband turned 71 two days after being released from hospital for the Whipple. His first treatment left him so bad, that they did reduce to 80%. Now I wonder what they can lower or take away for #8, without compromising the goal. We will be talking to Dr this week to review everything. I pray that all is well with you and we all can find peace on this journey. Thanks❤️

Thank you and prayers for your husbands recovery and for you as well.

@kjc12 , I'm sorry to hear the toll this is taking on your husband. I'm sure being 11 years younger (60) is in my favor. I can't say I'm eating a particularly good diet -- I'm eating whatever the heck feels good, but there is a lot of protein and animal fat involved. I just had round #13 of chemo two days ago, and the nausea & neuropathy are getting a little worse cumulatively each time, but haven't bowled me over yet.

The infusion center does a good job with my pre-meds. They switch Zofran out two sessions ago and replaced it with Aloxi, but I'm not sure if I can tell a difference. After chemo, it's whatever works that day... Comfort food, CBD gummies, Tums, Zofran, steroids, Imodium AD... but I'm usually OK about 3 days after a treatment.

@ncteacher and @kjc12 , when I was on Folfirinox before my Whipple, we reduced the Oxaliplatin component to 75% or 80% of nominal over my last 4 treatments to counteract the neuropathy. I had no way to tell if it changed the outcome, but it can be done; and I would suspect that for any ingredient. On my current regimen, the onco has offered to reduce either the Abraxane and/or the Cisplatin to minimize neuropathy, but I'm going to keep taking the full dose as long as my numbers keep improving.

@gamaryanne , I have the ATM mutation, which is said to respond well to platinum agents, but I'm surprised to be getting so much more response to the Cisplatin (along with Gemcitabine and Abraxane) than I got from Folfirinox (containing Oxaliplatin). I don't know why they can't figure out much sooner which drug combo will work better for a specific person.

I keep an eye out for clinical trials targeting ATM mutations, but SOME of those that target other mutations related to DNA Damage Repair (BRCA1/2, PALB) are also applicable.

Then, there are also trials that are tumor-agnostic and/or mutation-agnostic. The Tumor Treatment Field equipment trial at Mayo/Jax is one example where the mutations don't matter. The BASECAMP/EVEREST trial pair, which depends on your HLA type (you can get tested for it), is another that is being tested on multiple types of solid tumors.

I had been on Folferinox and now presently on Gemzar/Abraxane. For each treatment, excessive side effects were handled with either time off or dosage reduction or both. Have these options been considered?

Thank you. We’ll see what the “team” feels would be the best way to handle the next round. I will keep everything I am learning in my arsenal of questions for them❤️

We did meet w/Dr and she has postponed any treatment for one month to see if my husband can get some strength and weight back. Scans came back clear. CEA numbers were good. CA-19 went from 40 in Mar. to 53 in July. We know she would prefer to finish all 12 rounds, so we will see what she feels is best based on new bloodwork and appt on 8/21.
We are concerned with constant diarrhea and the rise in CA-19. Did you have similar things happening during chemo?
I hope things are going better for you. Thank you.

Hi,
My experience has been that my CA19-9 numbers have gone up and down, most recently up to 1400 from 1080. But, before that it was 1600. My doctor said that trends are most important than actual numbers and that no determination can be made solely on the test without an accompanying scan. Two more months of treatment before next scan. Very stubborn disease - been dealing with it for almost a year. For me, diarrhea was a problem with Folferinox, but not with Gemzar Abraxane. Imodium worked very well for me. Best wishes and I hope this is helpful.