First chemo today went awry..anybody else have this problem or know anything from experience?

I am Stage IV with mets to the liver that were removed in surgery nine weeks ago. My first chemo was scheduled at 11 a.m. today (had my port put in surgically on Monday and just over that).

They let me sit about an hour and a half before calling my name. I finally went to the receptionist to ask what the problem was, as did my husband before that, and all we were told was that somebody would be coming out to the waiting room to talk to me.

As it was getting close to two hours the charge nurse supervising chemo did come out. To make a long story short, she told me that due to the government announcement yesterday that made the nationwide shortage of Fluouracil very official to hospitals, I would not be able to get my chemo. I asked if they were out of leucovorin too and she said no, they had some in this week, only out of FU. I asked why couldn't I just get that along with the oxilpalatin and just not get the FU today. She said leucovorin is not given except in combination with FU, so my entire regimen would have to be changed.

I asked if I could postpone chemo till they had the FU back in stock. She said the hospital, as was suggested in the official announcement, was not putting anyone who was not already on the FU regimen on it now due to the uncertainty of steady supplies (I read the shortage will last at least till October after I got home today). She said my doctor was being paged to inform him of the situation and to ask for alternative orders. They finally took me back for infusion and said I would be getting a regimen of Oxilpalatin infusion plus Xeloda prescription pills.

Then my insurance company would not approve the Oxilpalatin because I was not getting it on the regular FU regimen. Their procedures for approval have not caught up with the official shortage. The hospital expects to get the insurance approval worked out...however, this does nothing for my confidence in chemo regimen.

After nearly 5 hours of getting nothing but saline infusion, we left the hospital. I expect the oxilpalatin to be approved and rescheduled next week based on the last thing I was told. I was also told the Xeloda would not be dispensed until after first infusion of Oxi since that is how it was sent to insurance.

In all my research and reading I have never heard of a chemo regimen for Stage IV of a combination of Oxilpalatin infursion plus Xeloda pills. Has anyone else?

This situation is diminishing my hope for a cure or long stretch of NED since FU is the most efficient chemo, especially since my cancer came back at high speed after I was only Stage IIA with no lymph node or metastasic involvement one and a half years ago. It could be anywhere now and just not showing up yet, just like it did not show up in my liver when it was there by CEA, PET or CT (only found by MRI).

K1