Back from Chicago

Just wanted to post a quick update saying the three of us are back from Chicago!! Drive there and back was really not bad, averaged 10 hours each way, with lots of stops for rest along the way. Karolek was a trooper and loved staying at a hotel and was happy when he finally got to go to the pool (the whole way there, thats all he talked about --'I just cant wait to go swimming').

Though it was still cool (and indeed windy in the 'windy city'), it was nice and sunny when we toured the streets of the beautiful downtown core. We made it to the Disney Store, LEGO store, enjoyed lots of great food -Cheesecake factory, tried Chicago's famous pizza, and had a really nice time at the nicest Rainforest Cafe I've been to :-)) It was nice to take this trip, though we knew why we were there and reality checks came when I had a few episodes of fevers running their course despite taking the drugs. But Konrad and I found much needed moments where we would just "forget" for awhile - Especially seeing Karolek's eyes light up as he saw new things --Life through the eyes of a 4-year old, so simple, so free of worry, and so easily made to feel happy..

Generally, the consultation was fruitful in that the doctor suggested two other drugs, which are available on the market, that could be options for me. As for the SGN-35 drug trial, I am not eligible at this time since they require a 4-week "wash-out" period from chemo prior to starting it. After looking into it, the trial sponsors and decision-makers decided Crizotinib is considered to be "chemo". Therefore, if I get off it, they have said I can be a candidate in one months time.. I guess we will cross that bridge if and when we get there.

Question is, how will I be if I stop taking Crizotinib? The increased dose this past week has not helped with the fevers but I'm still not convinced its stopped working altogether.. Hard to say but one month without any treatment (except prednisone?), with a very unpredictable and fast-progressing cancer.. Scary thought.

I see my oncologist tomorrow. We will go over the options again. It feels like a bit of a race with time -- fevers are now every 8-10 hours. Each day is crucial and there is no time to waste but unfortunatly no easy or obvious decision stands out at the moment.

I am hoping one of the other two drugs (I will post more on them later) may be an option first, but not sure if they also require me to be off Crizotinib before I can start them.

I will post when I find out more tomorrow.
Paulina