Lies, Damn Lies, and Statistics

[Thanks to Mark Twain for the title.]

You may note that the mixed results of our last test included the statistical reference of a “10 percent reduction” of the tumors and that the NIH only accepts 30% as a qualified “successful” completion.  But, with melanoma it’s not that simple.

First, melanoma is such a varied form of cancer that it is difficult to predict or confine its metastysis (spread).  Second, there are many variables that enter into this treatment I received.  The average dosage of IL2 (which boosts immune cell growth and activity) is 6.  Some people can take as many as 15 doses.  Some people get so nutty that they run down the hall, naked, screaming they are on fire.  I’m sure that Frances and Merritt (not to mention me!) are glad that didn’t happen to me.  I received 6 doses and only saw ants crawling on the bed.   And I talked to nurses who weren’t there,  but at no time was I ever naked or on fire.  (I’m sorry for that visual image.)

So, would more doses help the success rate?  That is, if my body were more resistant to the drug crossing the blood/brain barrier (when you start hallucinating) would that improve the success rate?  How would one know ahead of time, before the treatment began, how one would react?

Third,  how long does it take for the “success” rate of 30% to be reached?  The doctors at the NIH seem to indicate we should have reached it within 6o days. [It was so hard to get them to say anything definite.  It was like nailing jelly to the wall.]  Are the TIL cells still there, working?  Yes….and no.  They are still there but the chances of them having further success is small, but that doesn’t mean it won’t happen.

Fourth.  I recall the success rate, at the beginning, being 30-40%.   But, of what?  How far had the cancer spread?  Obviously, it is not uniform in every patient; some people have extensive Stage IV progression and some, like me, have Stage IV but nothing in any organs.  In reality, Stage IV must be divided further.  For example,  Stage IV could have ten (or more) sub-sets indicating the aggressiveness of the disease.  So, if there were more test subjects who were Stage IV – 3 or under, is the success rate greater than those who were Stage IV – 4 or above?

Finally, we are all so different, physiologically, that it’s becoming obvious to Frances and me that we may have to try a variety of treatments in order to find the right one – or the right combination of treatments.

Sensing the NIH will release us after our next visit, we have chosen to work with a local oncologist, Dr. K. Patel, who has been given excellent reviews by Malcolm and Sandra Edwards.  In addition to being a fine oncologist – with sources and experts in the best cancer treatment centers in the U.S. – they hail him as being committed to his patients and very compassionate.  (I wish I’d had him put my halo on!)

There are still more things to try.  No one is giving up, especially Frances, who is like a pit bull with a new bone: she is tenaciously working on getting the best advice and treatment we can find.

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