Good news!

I wanted to share my good news! Since I progressed on 5-FU and Avastin, after dropping Irinotecan when labs and scans went well, I had to go back on the big guns putting Irinotecan back in. FOLFIRI plus Avastin.

With FOLFOX my CEA continued to rise for a few cycles before coming down. With FOLFIRI and Avastin, it continued to rise the first cycle, but headed back down after the second one. I fully expected that after just one FOLFIRI this time my CEA would climb to 16 or so from just over 11. But I just got the call with good news! It is down to 7.3. I'm on my second cycle right now, so I expect it to drop to 5 or lower after this one.

I had a good conversation with my oncologist and we discussed my options for this cycle, and my options for the future to try and tweak things so I can tolerate chemo longer and have a better quality of life. We chose to go with the full guns again this cycle, with the understanding that as soon as I am headed in the right direction we will drop the 5-FU. That way if my CEA starts to climb, we'll know I need the combo of FOLFIRI. But if it continues to drop or stabilizes, we'll know I don't need it. Irinotecan is definitely the drug making the biggest difference for me, and I hope I do not need the 5-FU to get these good results. That could make a huge difference for me, not being hooked up to chemo those two extra days. And I could probably drop the Neulasta shots too! Instead of 4 good days out of 14, I think that could be turned around to 10 good days!

Due to the awful back spasms that we are pretty sure Neulasta is causing, I got a prescription for the big pain killers - Dilaudid. I will ONLY take them when the pain has me so impaired I can't work anyway, or sleep. I will not go through another two fulls days of no sleep. And even though I won't work much (not with important things) on pain killers, I wasn't getting much done in that much pain anyway. Vicodin, Percocet and Darvocet all make me very sick. I've done well on IV Dialudid before. I hope that is true in pill form too, if I need it.

Things are headed in the right direction very quickly. I couldn't have asked for better news (well other than a miracle cure). Thanks again to another colon cancer patient for sharing her information with me, which I presented to my nurse navigator and oncologist, for tweaking things to keep my cancer under control with the lowest toxicity. They agreed. I am so thankful to those I've "met" through list-serves and colon cancer boards. I've learned a lot, and gotten a lot of much needed support to make the experience as tolerable as possible, and to help my medical team to stay creative and open to individualized treatment. Thank you everyone!