ginabeewell wrote:I asked Dr Kemeny to consider keeping me on FOLFOX since my response to it has been so good so far. She wanted to spend some more time with my file before deciding which chemo to use.
ginabeewell wrote:I think Dr Kemeny’s instinct is to switch to FOLFIRI. I had such a tough time with diarrhea on FOLFOX that I’m a little worried about the switch. I really wish someone would take me off Vectibix, but so far it seems to be working so I stay on it, rash be damned!
You're right that Dr. K's instinct is to go with Folfiri. That's because all the studies/clinical trials were done with it, so she has the most data on its efficacy with the pump.
I did Folfiri initially after my pump was implanted, but three months later I had double-lung surgery and an ileostomy reversal. After it, I asked if I could go back to Xeloda (which I had been taking prior to my liver resection + pump) because it was easier for me to take the pills at work. She looked over my records, saw it had been very effective on my tumors, and let me switch to it. I'm sure part of her decision was based on the fact that no new tumors came up during the 3 months after the pump surgery.
So it's worth asking her about staying on Folfox if that's what you prefer. I think you could talk her into going off Vectibix, if not immediately, then in the near future. Once it looks like the FUDR in the pump is working to keep your liver clear and no additional extra-hepatic lesions show up, she'll feel more relaxed about your chemo.
I wanted aggressive treatment and was young enough and healthy enough to handle it, so I let her make all the decisions. I'm NED now so no regrets there!
You're doing great! Make sure you are eating plenty of protein so you heal faster. Just because your incision is closed, there is still a lot of internal healing that has to happen.
The puffiness you mention is irritating, but it will go away as the fluid leaves the area. It is weird though - I freaked out the first time I saw my abdomen in a mirror!!!
A few weeks later, the pump clearly showed up as a small bump so I knew the extra fluid was gone. I wore compression running tights which made it a lot more comfortable to walk around in NYC. You can grab a pair at Uniqlo if you don't have some with you. Or wear tights under your pants. They both work.
Hope this helps!