Friday, August 15, 2008

Waiting around to see what's next

Anyone with something like this going on will tell you that the times in between are the hardest: between diagnosis and testing, between the tests and the results, and between the results and the plan. I'm back in the last category now, waiting to see what we do next (and what the options are after that, and after that).
The internet and friends have lots of suggestions, everything from new cutting-edge technology through mental imagery to coffee enemas. All of these have actually been funded as studies, though there is nothing that cures this form of cancer and very little that seems to slow it down. I got excited reading about the "cyberknife" which is used in several highly-regarded hospitals, but the latest I read on it http/apps.pathology.jhu.edu/blogs/pancreas/ (from Johns Hopkins) suggested that it has promise but isn't quite ready for prime time yet. A friend told me about a study using radio waves rather than radiation; there is a list of surgeons circulating on the net who specialize in Whipples with vein involvement; Johns Hopkins is studying a program of vaccinating people post-Whipple with something or other that is supposed to help, but the problem with all of these is that the results are spotty. You notice I'm not even getting into the coffee enemas. Waste of good coffee.
The latest one I'm checking out to run by the oncologist on Monday uses high doses of curcumin, the stuff that turns turmeric yellow. A study that came out last month suggested that at least it isn't harmful and may help -- but my homework this weekend is to find out a few stats about it. Like does it seem to make any difference?

2 comments:

Jack and Steve said...

Lucie, there is nothing worse than to be in the "limbo" state waiting to hear results or for the next meeting with the doctors to find out the next steps. Jack went through this at least 8 times last year. The best thing to do is to keep busy and immerse yourself in activites that mean the most to you. Best, Jack & Steve

Arctic-mermaid said...

Hi Lucie;
The last comment seemed to cover it well. Keep busy with all your favourite things.

Thinking about things you have no control over can amount to lost time.

enjoy this day!