On December 16th, 2007, Isaiah M’s family, including his mom, grandparents and uncle, loaded him into the car and began a 14-hour trip from Tombstone, AZ to Houston, TX for treatment of his brain stem glioma. A few days earlier, his large family had celebrated his impending trip and his 7th birthday.
As I have collected the stories of these patients–stories that span decades, stories that will number the hundreds by the time I’m done–I’ve seen this trip made several times. This is often how it begins:
Several weeks ago, Altamirano and Isaiah’s mother, Elizabeth “Bizzy” [H], were searching the Web for medical help and information when they “stumbled across” the Burzynski Clinic in Houston, which has had good results with its own combination of therapies that are in clinical trials for cancers just like Isaiah’s.
And the family, who would have preferred to remain out of the media spotlight, has capitulated to the realities of the boy’s rare condition and their reliance on public generosity to try to save his life. Isaiah’s initial diagnosis quickly became a focus of attention in the Tombstone schools and community and has now been featured in this newspaper and on the ABC affiliate television station in Tucson. An estimated $20,000 has been donated through an account in Trudy [A]’s name aka “Isaiah’s Account” through Bank of America. It’s enough to get them started at the clinic in Houston, but upon completion of Isaiah’s hospital treatment, continuing medication at home is expected to cost $7,600 each month for up to six months, and a few more trips back to Houston for checkups will be required.
What the reporter, Cindy Skalsky, fails to mention is that patients are generally not expected to pay for experimental treatment. She does not realize that Burzynski has never had a reputable study published under peer-review in 35 years. She doesn’t realize that she is on the verge of a once in a lifetime story, but that she missed it.
On January 27th a golf tournament was held as a benefit for Isaiah, and on Feb 9-10, the family organized a fundraising car wash.
On February 15, 2008, the Tombstone Epitaph, reports that Isaiah had begun his treatment on Christmas Day and that the family has been able to raise more than $15,000 for Burzynski. (The projected costs are $8,000 a month.)
Most stunning is a revelation from Isaiah’s family:
If I had my way, that guy would never be allowed to pose with another child ever again.
By the time that article came out, of course, Isaiah had been back into the hospital because of swelling caused by his steroids. The family waited anxiously to see if the antineoplastons worked. In a little side bar on the 2nd page of the Epitaph, we see that the family is excited because the tumor had shrunk 5%.
This, however, is potentially really, really misleading, and if they were told to celebrate because of this by the Burzynski Clinic, I’d be horrified. As a research oncologist recently told me:
[I]t’s a huge stretch to claim a 5% change on anything. In fact, it’s pretty much meaningless. For example, the RECIST criteria ignores anything less than a 20% increase or 30% decrease in diameter as stable disease:
The link above shows:
RECIST criteria are […] based on a simplification of former methods (WHO, ECOG) and based on measurable disease, i.e., the presence of at least one measurable lesion.
RECIST criteria offer a simplified, conservative, extraction of imaging data for wide application in clinical trials. They presume that linear measures are an adequate substitute for 2-D methods and registers four response categories:
*CR (complete response) = disappearance of all target lesions*PR (partial response) = 30% decrease in the sum of the longest diameter of target lesions*PD (progressive disease) = 20% increase in the sum of the longest diameter of target lesions*SD (stable disease) = small changes that do not meet above criteria
It’s hard to say that 5% is anything. Given that Isaiah was on steroids, it’s not unreasonable to think that the 5% reduction would be caused by them. The disease seems to have progressed, unimpressed by Burzynski’s antineoplastons. In June we receive that bad news.
Isaiah’s story ends as all the other stories I’ve documented here do, with an obituary and a family who has been left heartbroken.