Thursday, September 16, 2010

GBM story

My brother David told me about a recent article describing a father's fight with glioblastoma multiforme (GBM), an incurable strain of brain cancer whose most famous recent victim was Ted Kennedy. The same cancer took my mother from us this past January. Treatments for GBM tend to be palliative; despite decades of research, there has been no breakthrough cure. This article, however, describes a treatment that may provide some hope for GBM patients and their families:

Eryn Holl's dad, Steve, was diagnosed with a brain tumor when she was in the middle of planning her wedding. The prognosis was devastating -- less than one-third of patients with Steve's form of glioblastoma survive a year.

She and then-fiance Ryan King were living in Virginia, but when she got the news, Eryn left her job and spent much of her time in California with her parents, all while continuing preparations for her marriage -- and never once giving in to the idea of not having her father there.

But the outlook wasn't always sunny. As CNN reported, Steve's cancer is in the same family as Ted Kennedy's fatal tumor, a type in which cancer cells can linger inside the brain after the tumor is removed and grow back, usually within a few weeks.

Knowing that, the Holls elected to try a potentially risky experimental treatment that involves removing the tumor and using cells from it to create a vaccine. Steve received the first of 14 doses last February and, last month -- on Aug. 21 -- was able to dance at his daughter's wedding.

As always, caution is called for. The article is uplifting, but it's also vague on matters that became very important to me as I started researching GBM during my mother's illness. It doesn't say anything about Steve Holl's age; it's vague as to when, exactly, he was diagnosed; and it tells us nothing about the effectiveness of this new treatment on other patients, instead stating that Mr. Holl was still healthy enough to dance at his daughter's wedding several months after treatment began.

It's good that Eryn Holl still had her father at her wedding, and I hope this new treatment staves off her father's GBM for as long as possible, but I also hope that she and her family proceed in the awareness that, barring a revolutionary cure, nobody survives GBM. There are patients who occupy the thin forward edge of the bell curve, and who do indeed live several years past diagnosis, but based on what little I can glean from the above-linked article, Steve Holl hasn't broken any curves yet. My advice to that family would be to treat each day as the golden borrowed time it is, because with GBM, that's about all you can do. Cautious optimism firmly married to realism is the best approach, not wild optimism coupled with false hope.

I'm always encouraged when I hear about new treatments; the one we had hoped to give to Mom-- intra-arterial Avastin-- sounded very promising as a measure for holding back the progress of the cancer, but as it turned out, Mom's GBM had progressed too far for her to be a candidate in the trial. There was nothing left for her to do but succumb.

Ah-- the above article links to a CNN article that provides a bit more data. Steve Holl has survived a year past diagnosis, and thus far, "none of the eight patients who have received vaccines made from their tumors has seen cancer return." That's very encouraging, but here, too, I'd want to delve deeper into the real statistics before giving in to my own private optimism. Example: not all the patients started treatment at the same time, I'm sure; how long has the longest-surviving patient been on the trial? As the article rightly notes, it's too early to draw any big conclusions; Steve Holl, by surviving a year past diagnosis, hasn't done anything different from Ted Kennedy, who lasted 14 or 15 months. But at this point, given the initial results, I'd say that it's not crazy to have a little hope.


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