Wednesday, July 8, 2009

Mired in the Last Ditch

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No sane person would want to linger in the Last Ditch: it is deep, dark, and dangerous. Yet, once mired in it, escape is problematic. The sides are steep and slippery, the way out unknown, and there are a disturbing number of corpses at the bottom. I want out of here!

As I show on the chart above, there was no response for two weeks after the first bendamustine infusion (May 26th), then two weeks of good response followed by a return to advancing cancer. The second infusion was June 23rd with no response as yet, just like the first time. The latest tests were on Monday, July 6th: the results will be known next Friday or Monday. If it behaves as it did before, we’ll see a drop in the numbers. If it doesn’t, we’ll have to increase the dose.

If I'm not responding, we may have to find another way to crawl out. However, at this moment we don’t know if I'm responding, nor what that other way out might be.

The anxiety this week is enough to loosen ones teeth. Usually, the strategy is to stretch out the measurements as much as possible, but because I'm pioneering this chemo here, I'm measuring every week. That way we'll all learn how the drug behaves in at least one patient. Meanwhile, every week for me is agony. Besides, look again at the chart: when is the right time to measure?

I’m tempted to call a hematologist at random in Germany and ask how this stuff usually behaves. Germany has been using bendamustine as an anti-myeloma agent for forty years; however in America I’m apparently a pioneer. Not that a word from Herr Doktor could change the outcome, but perhaps there would be some relief from the wretched anxiety that is chewing on my backside as I try to find a way out.

2 comments:

  1. Lon,

    I was interested to hear Bendamustine is so unusual here in the US. The doctor I saw at Mayo/Jacksonville (Dr. Solberg) suggested Bendamustine/Pred as an option for me after the Pomolidomide trial there stopped working for me. I don't know how much experience Mayo has with it. I'm in a fairly similar situation as you and considering Bendamustine as one of my backup options, but I have to say my onc at Emory was not excited about it. I saw one other person on the listserv though who responded to it also.

    Best of luck and thanks for sharing your experience.
    Janice in Georgia
    janmileo@aol.com

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  2. Everything is crossed for you - wishing you Good Luck.

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