Topic: And now... it's on for Chemo!
It is a beautiful day in Sarasota. Temperature 78 deg F, fluffy clouds in a blue sky, light breeze. Shhh! Don't tell anyone! 
After 6+ months of elevated bilirubin, I learned today that I'm down to 2.2 - low enough to start chemo. And not a moment too soon. I've metastasized to both lobes and to the abdominal lining, maybe more. I'm ready to start! Scheduled for first dose Jan 30th, right after I finish my antibiotic regimen for the infection of last week. FWIW, I'm done with the Therasphere trial, it didn't work for me.
I've been following with interest Derin's story, regarding what chemo to use. My Onc is also being very cautious and will start me only on Gemzar at first to see how I tolerate. We can't let the bilirubin rise. Derin, I emailed you but maybe it got lost. Where are you going here for treatment? I'm driving up to Moffitt - one hour each way, but once initial dosage and followup is done I can get the infusions locally.
Following the recommendations of several on this list, I've decided to get a port. I figure, "Why wait?" I've been a blood donor for 30 years and now I'm getting stuck and IV'd weekly, sometimes daily. It's getting harder some days to get a good line. The phlebotomysts (sp?) are great at Moffitt but the clinical nurses don't always stick me with the same ease. I can see the scarring and am tired of putting up with "fishing". And has anyone else noticed how veins will roll when you lose confidence with the nurse's needle stick?
Had my bilirubin not gone down, I was given one other option (other than palliative). Moffitt is part of an NCI Phase 1 study of the effectiveness of belinostat for patients with hepatic dysfunction. I'll post that info on the Alternative Treatments board.
Best to al,
Michael
