Need opinions on next step - LONG, I'm sorry!

January 2, 2004

I think I'm at a bit of a crossroads with my treatment regimen and would like

some input/opinions from the group, please....

Background: Diagnosed Stage IV Dec. '02, multiple liver mets & possibly 1 in

lung

Feb '03 - radiation and CI 5FU X 6 weeks

April '03- follow up CT showing no more lung met and improvement in largest

liver mets but new tiny mets now in liver

May '03- TME with temporary ileostomy - liver ultrasound shows liver

" literally studded with metastases "

June '03 - Xeloda 2500 mgs./day X 2 weeks with 1 week off

July '03 - Ileostomy reversal

August '03 - Xeloda restarted - same as previous regimen

September '03 - CEA is decreasing...down from 70 to 7.6

October '03 - Xeloda regimen unchanged but CEA starts rising - from 7.6 to 19

November '03 - Followup CT shows possible 2 tiny mets in lung, liver mets

" markedly improved " , a new ill defined presacral soft tissue density possibly

r/t

radiation therapy.

December '03 - CEA rise to 30. Xeloda discontinued. Onc. recommends adding

Oxaliplatin regimen.

Here's my dilemma: I don't really want to do the Oxali yet and I'm not

convinced that the Xeloda should be d/c'd (especially after reading 's

latest

CEA article). I asked the onc. about increasing Xeloda - his response was

that increasing dosage doesn't result in more treatment, only more side effects.

He's convinced that the lung mets show that the Xeloda isn't working even tho

the liver mets are hugely better according to the CT. My radiation onc.

reviewed the CT scan (not the report like the onc, but the CT itself) and said

overall it was great and he could see either option - adding Oxali or continuing

Xeloda alone.

I am self pay and that does play a factor in my decisions to some extent. I

posted before about Oxali's expense. The pharmacy co. is willing to work with

my onc. but my onc.'s practice won't work with patient assistance programs on

IV meds. I asked my onc. about clinical trials and he said they only pay for

unapproved drugs so they would be of no help for me at this point.

Thanks for anyone who read this far....please feel free to share any

thoughts/opinions,etc.

Terry in GA

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