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It's been a week of some more ups and downs, but the good news is that I am now on chemotherapy. The cancer is in retreat as the counter-offense begins!
Monday
The beginning of this week brought some good news. Because Dr. Xiong (incidentally, pronounced "Zhaung") is not an official oncologist for the clinical trial, I was switched to Dr. Lin, with whom we met Wednesday. He and his P.A. turned out to be very good in our estimation - both in terms of their thorough explanations and their apparent knowledge. Furthermore, on Monday we heard from the research nurse that it was likely that I would get on the trial.
Tuesday
Tuesday, I had the endoscopy in the morning. It was clear - no problems in the esophagus, stomach, or esophagus that would preclude me from the trial. Then I went to Methodist hospital for the port-o-cath surgery. It is a double-coin shaped pod (like my old contact lens case) just under my skin beneath the clavicle. It has two catheters than run down towards my heart. The surgery was for 1:30 and I was prepped by 2:00. The surgery didn't occur until 8:30. I was actually quite content with the wait, as I had the word of the surgeon that "he would fit me in" because he thought is was a terrible idea for me to go all the way to Dallas to get the surgery. The surgery was over late enough that instead of sending me to recovery, they checked me in for the night. This was of course not what we planned, but that was the last piece necessary for the trial so I was glad to do what they wanted.
Wednesday
Wednesday came the bad news. Due to an allergic reaction I had several times while taking cisplatin for my cancer 20 years ago, I cannot join the trial. Cisplatin is a cousin of oxalyplatin, which is one of the three baseline drugs with which PTK787 is tested. The managers of the trial have made it clear that if you so much as have had a hypersensitivity to any related drugs, you cannot join the trial. Furthermore, we found out that because I would not be on the trial, I would return to Dr. Xiong. However, upon meeting with him to discuss our options, he was a very different man. He did not have a clinic schedule Wednesday and was far less rushed. He wanted to explain the options and side-effects well. Perhaps this was in part because Judy had complained to Xiong's staff after she sat with us on Friday to experience with us how we were treated. In fact, when we entered the clinic on Wednesday, I felt like a food inspector walking into the kitchen of a restaurant. All of the sudden there was an increase of attention and smiles.
The protocol
The protocol we decided upon, which Dr. Xiong believes is the best approach (and a little better than the trial if I had received the placebo) is as follows:
Day 1: Take intravenous irinotecan. Begin oral Xeloda (oral form of 5-FU)
Day 2-14: Continue oral Xeloda, taken at home
Day 15-21: give body a rest from chemo
Repeat cycle several rounds, then get CT scan to see if liver tumor is shrinking.
There's a long list of probable and improbable side effects, which I won't go into now. The staff at MD Anderson tell me that their experience shows that different people have widely different side effects, and at different times during the chemo protocol. I am praying that I will especially not have the bad ones, which require postponement or termination of the particular drug. More than that, of course, I am praying the drugs will be very effective. Incidentally, the irinotecan can have very serious effects during the first treatment. Fortunately, I did not receive these for my first dose.
This week, we moved from the Jonsson's house to the Rotary House, a Marriot-managed hotel that connects to MD Anderson. This gives us close access in the case of any chemo side effects or if my fever begins to run high again. Thankfully, my fever has been well under control this week. The Rotary House also has amenities geared towards cancer patients, such as MD Anderson staff on call, a video library, and connection to MDACC scheduling computers. Finally, it saves time and energy for Christine and I, which we have both been sorely short on this week.
We will be here until Tuesday, when we will meet with Dr. Miguel Rodriguez-Bigas, the colon surgeon. It is advantageous for him to be familiar with my case should the need arise for immediate surgery.
Looking forward
Finally, I'll share a little of our excitement with you. In February, Christine and I planned a 10-day vacation to Teton and Yellowstone for our tenth wedding anniversary (We were married Dec 1992). It is scheduled for late August. Since the original diagnosis, we have been hoping in the back of our minds that once the chemo schedule was made that it would not conflict. All the other protocols discussed would have required us to cancel or significantly shorten the trip. It turns out that if we can stay on the current chemo course with no complications, our vacation is planned right where it needs to be to fit between treatments! We are continuing to look forward to that.
Thanks for your continued support and prayers. We look forward to seeing our Dallas family and friends when we return next week.
Posted by Greg at July 04, 2003 01:43 PM | Comments (5)