xeloda's final revenge
This morning I preached sermon #3 of a 3-part series at Altadena Baptist. It's been a great opportunity, but I have to admit that having completed it I feel much more relaxed than I have in a while.
It's been a rough week. Hand & foot syndrome came back last Saturday, not quite as badly as it did the first week in January, but the worst it's been since then. On top of that, I developed some kind of swellling in my tongue that nearly resulted in my being taken to the hospital Monday evening. We were able to bring it down, first with steroids and benedryl, and finally with an antiobiotic mouthrinse called "Daniel's Solution," which sounds like something concocted in a still off a dirt road in Arkansas, but whose healing effects I swear I could feel within five minutes of my first dose. My throat remains a little sore, but yesterday I was able to enjoy the first meal other than yogurt in nearly a week (homemade boorenkoel, in case you're interested, an irresistible Dutch mash of potatoes and kale served with Polish sausage), so I feel pretty content.
I'm pretty sure that when I see Dr. Iqbal on Friday she'll take me off Xeloda for good. It seems to have been the culprit behind most of my worst experiences over the last three months. By now, the dosage has been reduced to a sub-therapeutic level anyway, so the only point in taking it is to see how much I can pester my bloodstream until it kicks me back. The idea of switching is both relieving and frightening, though. I've heard from more than one oncologist that Gemcetabine plus Xeloda is the treatment of choice for advanced bile duct cancer, so I don't know what the next step looks like.
I'll go in for another CT-scan tomorrow. By Friday I should know more.
posted by scott becker @ 4:31 PM
5 Comments:
I was just about to send an email asking for information that you have covered here. I accept this information, like you, with mixed emotion. I am so sorry that your body could not tolerate the thereapy that is currently recognized as the most effective. But it will be wonderful if your hands and feet can bet back to normal, what every that is. I do hope that includes pain free at least most of the time. The indomitable human spirit somehow learns to treat existing trauma as the norm, all the while knowing that it is most certainly not the norm, but has to be handled anyway. You and Karla, all of our beloved family and friends, emotionally holding hands and supporting you and each other in whatever manner we can - perhaps all of this is just that indomitable human spirit at work. There is nothing more I can say right now without either getting maudling or fearful/tearful. I love you. And I just want you and Karl OK. Love, Mom
Scott, thank you for allowing me to read your blog. It reminds me of someone I knew a long time ago :-). Thank you for the opportunity to be here once again.
Dear Scott.
I too want to thank you for sharing your situation with us. To me, you are teaching a life lesson on how to handle what life throws at us all, eventually, but, showing it in a more excellerated pace. You don't know just how valuable you are to us. Hopefully there will be a light at the end of the tunnel for you here, I pray.
Your friend
Dear Scott, we are sorry you are having a bad time right now, we love you and are praying for you. Love, Aunt Doris and Janet
Hope all is going well, and that you've straightened out the Xeloda problem.
Other drugs that have been used fruitfully with Gemzar for my wife (out six years from diagnosis, with only some metastases in her foot (of all places!) left that we know about) include platinum (she's been on cisplatin and oxalyplatin at one time or another), Taxotere, irinotecan, 5FU (which is pretty much the same as Xeloda, as I understand it, except that Xeloda is an oral pro-drug version kind of thing -- so that might not help you!), and, though I wouldn't recommend it, interferon. (Gemzar and interferon together caused TTP last January, which almost did her in -- at least, I suspect those as the culprit.) She was on Dr. Howard Bruckner's (of Cabrini Medical Center now) GFLIP protocol or variants of it for 3 years: Gemzar, 5FU (later switched to Xeloda), irinotecan, and a platinum. During this regimen, tumors in her liver disappeared and haven't been seen again, and mets in her lung stopped growing (after adding Taxotere), so I'd highly recommend it -- and Dr. Bruckner in general. He's a bit of a renegade, but probably the best for this cancer in the US, if not the world.
In any case, keep fighting, and best of luck! (If you have questions, etc., feel free to contact me at rmt at umcs.maine.edu.)
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