ginabeewell wrote:I have found reading other's journeys helpful, so starting to document my own.
I'm just out of the hospital after 5 rounds of FOLFOX + Vectibix gave me typhlitis (swelling of the colon and perforation that allows gas to pass into the abdomen). I spent seven days there under observation - they gave me round the clock IV antibiotics in hopes of avoiding surgery to remove half my colon. Thank goodness it worked well enough to avoid that!
The doctors think that the Vectibix put me over the top, so our new plan is a chemo break - well timed for the holidays, it's been 3 weeks since my last treatment and will be another two before I resume. They'll resume with FOLFOX and slowly reintroduce Vectibix depending on my response. I'll be getting more regular CT scans, since the only way the typhlitis was recognized was via scan.
So far they have been happy with my progress - my 14 cm largest met is down to 5 cm, and the doctors are calling the response amazing and remarkable. Not sure if I am just a good responder of if the Chinese medicines I was taking alongside chemo helped to push the balance for me, but I'm inclined to keep on doing what I've been doing!
At one point, they talked about stopping chemo and starting radiation. But I found out that radiation would eliminate the possibility of an HAI pump, something I want to keep open. My response to systemic chemo has been so strong that they do not think I should opt for the pump right now. The goal will be systemic chemo to get to a point where my liver is resectable, and then maybe do a resection and a pump placement at the same time. The doctor I spoke with at Northwestern in Chicago trained with Dr Kemeney and "practically has her on speed dial." Still, I think I will at some point request an MSK consult as they place and administer more pumps than anyone else, and I know they know it better than my doctor here does. I adore her, but with my life on the line I can't afford to think about feelings!
I'm so happy to be out of the hospital and back home - and with an appetite. I lost about 25% of my total body weight between the cancer and the chemo, so my focus next two weeks is to EAT (soft foods only for a while!) and try to gain back some weight so I am in fighting shape to resume chemo. Hopefully the break won't be too long and I can rely on the Chinese medicine to help me keep things at bay for the time being.
heiders33 wrote:I decided to get the pump as adjuvant therapy even though I had just one liver spot pop up after my initial stage III treatment. I decided this because: 1) I live in NYC as well, close to MSK!; 2) I am young (36 years old); 3) I have the KRAS mutation which makes certain treatments unavailable to me; 4) I want to do everything I can do avoid further chemo and surgeries down the road by killing off any micrometastases in the liver. Yes, going in every two weeks to have my pump filled for as long as I have it is certainly limiting. However, I have not found the pump to be much more limiting than that. Yes, Dr Kemeny is strict about running and jogging, but actually my surgeon (Kingham) says it is no problem, so I have jogged a little (don't tell Dr K!). I don't really play contact sports anymore so that is not an issue. Other than those things, I wouldn't worry about it limiting your lifestyle. With the Medtronic pump, you can ski, scuba dive, sit in a hot tub. I prefer the few limitations now to the more extreme limits and struggles of further chemo and operations down the road. I am still in the middle of treatment so I can't speak to long term NED status, but I am hoping to get there! If I were you I would list out all the pros and cons and go from there. I don't want to tell you one way or the other, just wanted to share my decision process.
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