I'll add some of my experiences to this thread. I have entered some of this information on other posts in this and other Forums on this great site, so I apologize if you have already seen this.
I have had quite a bit of "experience" with the Oxaliplatin and oral Xeloda combination since I was on a clinical trial with that combination from May 2004 though October 2005 (16 months) after which the trial was stopped because the spots were not measurable, but also because my platelet count did not get up fast enough for the trial treatment intervals. Spots began showing up again in Feb 2006, and I went back on that treatment, off study, for two months, but that chemo combination no longer worked for me.
Jeff mentioned the amount of Xleodia he was given at first. In comparison I was started on a much higher dose, which was reduced 20% the following month, then reduced another 20% several months later, with the final 20% reduction shortly before the end of the clinical trial in Oct. 2005. When I resumed the chemo in 2006 the Xelodia was at the final reduction rate, which was: 36 (500mg) tablets (total 180,000 mg) taken every 8 hours during a two and half day period following the Oxaliplatin chemo.
Yes I was dealt lots of Royal Flush hands as Jeff calls it. I was hospitalized once to get my fluids up. Afterwards, I took immodium on a regular basis every day (with the same regularity as the diaherra). I also drank a lot of Gatoraid or some cheaper drink with lots of electrolytes in it. Over the ensuing months I got used to that regimen.
As I mentioned my platelets would get very low and take a few weeks to get back to the trial threshold of 75 for the next treatment. It took 7 weeks at the end for the platelets to get high enough. My white blood count was OK (although it had gone too low during a previous treatment with Gemzar -- a drug which did not work at all for me.)
Yes my appetite was down, and is still recovering very slowly, and of course I had the neuropathy in my extremities (especially my fingers). Trouble buttoning my shirt, etc. That too is still there (my last treatment was Oct 2005), but it's not much of a problem unless I think about it. There were many other side effects too, of course.
One final caution for those on Medicare. While I was on the study the drugs were paid by the study. But when I resumed Oxaliplatin "off study" in Mar. 2006, Medicare would not pay for that drug. They said it was "off label" and not approved for CC (bile duct cancer in the liver), although it was approved for colon cancer in the liver. They said the decision was not appealable. My only options were to convince my secondary insurance to pay, negotiate with the drug company, or pay the bill myself. It was then I found the patient/retail cost of Oxaliplatin for just a single treatment was $12,000. I later found the hospital "only" paid $3,400 per treatment. (Pretty big mark-up). I was fortunate because my HMO agree to pay that cost per treatment. I also found I was fortunate, not only because the HMO paid, but because I was on a secondary insurance which would pay. Earlier in the year I had the opportunity to get out of the HMO which required referrals and go to a secondary insurance not requiring referals. Fortunately I did not switch insurance companies. Had I done so, I found the reputable company I was thinking of switching to only paid for drugs approved by Medicare, and since Medicare did not approve of this in the first place, the secondary insurance would not have paid either. In that event we would have to work out something with the drug company or I would have had to pay $12,000 per treatment. Again I apologize if you have seen my post on this issue elsewhere, but it was a very stressful "learning experience" during a very stressful time. It is so hard for senior citizens to pick insurance programs when they don't know what medicines/chemos they'll be on.
Jeff, Lynne, and all the rest of you who are on this and other treatments -- I want to wish you the very best. Never give up hope. I've also mentioned that new treatments become available continually. Most of those treatments which have worked for a period of time for me were not available -- even in trials when I was first diagnosed with CC in March 2001.
Jerry
