High CA-19 4,500

Current research shows chemo after surgery is highly advised. Especially if your CTDNA is positive along with the score you are seeing for CA19-9.
Chemo gets a bad rap. I’m not saying it is a party, but good oncologists prescribe pre-meds as a part of the infusion process to make the worst days much easier. Depending on which chemo is prescribed, most here can chime in on how many “down” days you will have.
My ca19-9 was 23k and came down to 50s on folfurinox which allowed my medical team to think out of the box with me.

Look for a pancreas center of excellence and go. You will be glad you did!!!!

I’m being treated by one, but am at a crossroads so went to Phoenix for a second opinion. Get a second or even a third!

I started a treatment with folfurinox and ended up in hospital 4 days. They aren’t sure what treatment is next for me. I did get a second opinion and said would do the same thing. Will see open to suggestions thanks

Re the Folfirinox, perhaps the dosage is too high? In my case, because of my age, the oncologist did round 1 at 80 percent of the typical dose, and that was more than I could handle. It really made me sick, although I didn't have to be hospitalized. Starting with round 2, we lowered the dosage to 60 percent of typical, and that has been very tolerable. We also dropped the oxaliplatin after round 8. I just finished round 19. While Folfirinox may not be the best chemo for your particular situation, you might want to ask about the dosage level and whether an adjustment would help.

Yes, IMHO, get a second opinion from an oncologist at a cancer center of excellence.

I will share with my dr. I had to go by ambulance, shakes, vomiting, and blacked out hope they can find something

I am home from the hospital and still can hardly walk. Too many side effects from this chemo. I think I am done. Will talk to doctor next week, but all I want to do is lay down, sores in mouth runs, vomiting, muscle aches, hot and cold sensations, headaches, I feel no quality of life 99 pounds. I am eating 45 carbs a meal, became diabetic when they took my pancreas out. I am just miserable

Pancan is a very challenging disease; it’s not for sissies! You’ve made it this far which shows your sense of courage and strength. I became diabetic after my distal surgery Oct. 2022. I lost a lot of weight trying to stick with the carb schedule until an 8 year survivor (stage 4) told mri worry about carbs later and eat what I want (within reason) and adjust the insulin accordingly. I was told the main goal now is to keep up the weight and strength. It worked! Too well I think sometimes cause now I wish I weighed just a little less. My cancer came back in Nov 2023 or else it really never was eradicated due to my 5 FU chemo. My ca19-9 rose to 3840 while drs looked for a visual of the cancer. I asked for chemo in the interim and my surgeon said “no surgeon in their right mind would give me chemo” at that point. They finally confirmed its presence via MRI and EUS. I’m on chemo again (aggressively 3 sessions on and 1 wk off), but on the gem-abraxane-cis combo and it’s working as my ca19-9 is at 550. Nausea is horrific now, but I’m sure I’ll find something out there eventually to help with it. I have 2 young adult college age children to live for (and a husband) and I ask for God’s help and give Him thanks constantly. I’m sure you have much to live for also and I dint know your beliefs and I hope I don’t offend them in any way, but I will be praying for you that you find the strength to be on the positive side of this nasty disease.

You did not offend me, I pray everyday for a cure. Sounds like you are doing great, I am afraid to take chemo again, going Friday to discuss options. No cancer shows up on tests, just c-19. I had my pancreas and spleen removed in November and I don’t think I have healed from that yet and haven’t got the diabetes under control. Have had days with 3 50’s and kicks my butt! How do you adjust the insulin? I am on a sliding scale and lantus 2 xmdaily. Thank you for sharing and prayers are being sent to you.

Just a little feedback. When I tried to go back on the 5Fu after surgery (and 3 month delay), I too ended up in the hospital for a week. Next month they are putting me on Gemcitabine and Abraxane in hopes it won’t be as harsh. Just a thought.

Prayer… love it! It’s taken me through the past year of chemotherapy, the terrible things that chemo did to my body and emotions, and several hospitalizations. In prayer I’ve found the old adage to be true, “God makes a way out of no way.”
Thanks for your heartfelt sharing and your prayers.