Care Plans or Protocols

I can't fathom going through all those treatments. I don't blame you for not going on. Has it helped? My hubby finished 12 rounds of the strongest Chemo (Oncologist) told us when he began treatments. Hubby only was going for 4... Then he agreed to 8....then 12. Again Preying you make peace about your plans ahead. 🌈

After 7 years I am still on 5FU every 14 days for 46 hours

@casey1959 I am not quitting/going on. The 85 chemo treatments have kept me alive 4X longer than Mayo gave me at the end of June 2022 :). I was at such a low energy level the last 4 months of 2025 that I do not want to be that depleted again. Interesting trying to find any protocols. I do understand that each of us is different as cancer patients, but I feel that there must be some standard recommended lengths of treatments.
I plan to keep on fighting. I just want to be more proactive in my plan of care, especially since I have a new oncologist since mine retired at the end of December 2025.

I just want to say how incredible your journey has been. Eighty-five chemo treatments is not quitting — it’s extraordinary resilience. It makes complete sense that you don’t want to feel that depleted again. Wanting a smarter plan is wisdom, not weakness.

With a new oncologist, this is a great moment to reset strategically. I’d encourage asking about updated genomic testing — especially KRAS mutation status — to see if there are targeted options or clinical trials that might fit. Treatment decisions don’t have to be just “more chemo or stop.” There may be maintenance approaches or mutation-directed strategies worth exploring.

Centers like Froedtert Hospital, The Ohio State University Comprehensive Cancer Center, Memorial Sloan Kettering Cancer Center, or Johns Hopkins Hospital also offer second opinions if you ever want additional input.

You’ve already proven you’re a fighter. Now it’s about making sure the fight works for you. I’m with you.

I too would love to learn more about protocols. I was off chemo for two months for a minor surgery. Scans in January indicated I was NED. The thought was to continue treatment until the next scans; Folfuri every two weeks (pump).
I’m wondering if it could be as effective spreading it out to every 3 weeks (instead of 2) or lowering the dosage.
Is there research or specialists that have suggested this would be as effective?
My Signatera was 0 and past 3 CA19-9 have been in 20s.

@mcharlesfrancis I have the KRAS G12D and TP53 mutations. I am glad you mentioned targeted options. I will add that to my list of questions this second meeting with my "new" oncologist. Thank you!

@gamaryanne
Bravo, Maryanne!
My chemos, when I was on it, were decreased to 60% of their potency. The lowest frequency I know is every 2 weeks. That's all I personally know.

@mnewland99
I had said I was on Naliri. I am not. When I restarted they put me on folfuri with Nulasta shot for white blood cells. Feel yucky for solid 3.5 days. That’s why I’d like to spread this out or do less.
Time to get a consult on this I believe!

@199 there are medications on clinicals right now, very promising and I was told might be soon, company is Revolution Medicine. In my case I was told would not work for me mine is not metastatic and not KRAS.

Your welcome, I spoke with someone on the study from Revolution medicine, he says that drug keeping him alive, he was diagnosed with stage 4 pancreatic cancer 8 years ago. Said his tumors are shrinking fast.