The only two other people that did it other than me that I know are no longer with us, Tammy & Jess both did it after I did, but a bit differently - they both had to get every treatment in the hospital once they got to the desensitization point due to severe allergic reactions. They both had much more advanced disease than I did when they did the protocol. They had run out of options - nothing else was working, so they went back to FOLFOX, but had severe allergic reactions. The choice was to stop all treatments, or use the desensitization and try FOLFOX longer.
I had a rare syndrome, and medium allergic reactions at first. Slowing infusion time and getting decadron mostly kept it under control, but then I had a big allergic reaction and needed solumedrol. After another more severe reaction, they were too afraid to give me oxaliplatin for my next treatment. My colon cancer nurse navigator, my oncologist, and an oncology pharmacist researched to find what to do with me. For my next treatment I got it in the hospital. For 3 days prior I had to pre-med with decadron and Benadryl. They gave those both to me via IV before infusion. I was given 1/1000 of the drug over several hours. When that went ok, I was given 1/100 over several hours. Then I got 1/10. And finally they gave me the rest over several hours. It took about 18 hours total. I did ok - no allergic reactions.
My next cycles were done at the oncologist. I had to pre-med for 3 days with Benadryl and decadron, and they gave me IV pre-meds before infusion. I turned out to have trouble with 5-FU also - a trip to the ER for an allergic reaction while hooked up to the pump. So I had to continue Benadryl and decadron until after disconnect. My infusion rate for oxy had to be kept at 6 hours. With the labs & pre-appointment with my onc, and all my pre-meds, I was at the oncology center from open to close on my infusion days. I was almost always the very last person done.
I don't think there was any difference in my blood counts due to the allergy. FOLFOX always hit me hard and I got Neupogen shots every cycle.
If I ever get to the point that nothing else works, I might try FOLFOX again, but I doubt it. I had no quality of life dealing with 6 days of Benadryl and steriods, plus all the FOLFOX side effects (more severe than most for me). I didn't feel human until just one or two days before the next cycle, and even then I was very weak. But for someone that has tolerated FOLFOX well in the past, but had an allergic reaction, doing the protocol might take care of things and make it a good option. Rate of infusion is a HUGE factor to anyone with a sensitivity or allergy to that drug. It still angers me that they start everyone at 2 hours, and adjust if they have a problem. They should start everyone at 4 hours and adjust up or down from there if needed.