Saturday, March 30, 2013


Dear Friends of Chuck,

It’s been nearly three weeks since our last post, and Chuck has just passed the mid-point of his radiation treatments at New York Presbyterian Hospital.  On Friday, March 29, six weeks after his brain surgery, Chuck underwent the fourth of six ramped up radiation treatments.  With just two more treatments to go next week, he is nearing the end of his radiation treatment, which typically follows surgery.  He chose a short course of stronger radiation dosage rather than a standard six week course. The docs were clearly delighted, as they have been finding—anecdotally--that these shorter, more intense regimes, which involve higher daily concurrent doses of radiation and chemotherapy, beat back tumor progression more successfully than the longer courses.  The choice seemed obvious to Chuck—less time in the grip of allopathic medicine, better results.  One could sense the doctors were pleased with the choice as well:  in this notoriously difficult disease, every successful anecdote will eventually turn into confirmatory data—statistics--that will improve outcomes for others.

For a man who couldn’t bear the idea of eating in a Japanese restaurant after the explosions at Fukishima, the word “brave” hardly covers what it must have taken to submit to the white coated radiation specialists and technicians and their x-ray machine, not just once, but four times in as many days in the past week.  ABC-7’s late afternoon news coverage, a fast-paced gallery of murderers, rapists, con artists, spoiled celebrities and local politicians, provided extra resolve.

We arrived at the Stich Radiation Center in the basement of NY Presby with an hour to spare, our hired car having sped through the park without encountering traffic or the kinds of disasters we were soon to witness on the local news.  With nothing to read, we fell captive to the flat screen TV on the wall in the waiting room.  After a two hour delay, Chuck noted that radiation to the brain would be vastly preferable to the local news fare.  Soon after, Chuck, visibly relieved for his reprieve from ABC-7, was escorted to the radiation “suite” and asked to don his fencing mask, as he calls it, with the black ink pin-points on it to guide the radiation beams.

After myriad warnings from medicos that the radiation might cause extra fatigue, the surprising and happy outcome on Day One turned out to be Chuck’s enhanced spirits and clarity of mind.  Thirty minutes later, he walked out of the hospital feeling energetic and alert.  He was able to find his way out of the hospital’s maze-like interior without once faltering, an I.Q. feat surpassing most. He told the car’s driver to drop him at 89th and Broadway so he could buy the makings of a sumptuous dinner at Gary Null’s Whole Foods, and walked four blocks home with groceries in hand. Dessert was vanilla ice cream with chocolate sauce and peanut butter; the steroids Chuck must take are causing an irresistible craving for sweets. 

On Day Two, we took another town car through the park and talked about Laura Nyro’s long ago wrongheaded decision to leave David Geffen’s management and go with Columbia instead of following Geffen to Asylum. Which led to a discussion of whether Clive Davis (of Columbia) was a visionary or something less.  Chuck’s view was that Davis was hardly a visionary and lacked the ear of Ahmet Ertegun or Jerry Wexler and complained that Davis’ tastes ran instead to little more than “middle-of-the-road.”  Seeking to avoid another long run of ABC-7’s afternoon happy-talk and local coverage, Chuck brought a paperback edition of a collection of speeches and essays by Noam Chomsky to read.   We also had a NY Post with us, which afforded occasional diversions like Kim Kardashian’s maternity wear.  

The effect of the day before was repeated, when, after an even lengthier wait of 2.5 hours, Chuck’s radiation session began.  Again, he felt better than he had in days, suggesting the salutatory impact of the day before had not been a placebo effect, or simple relief.  Another happy result:  we asked to speak to the resident who had been the first MD to evaluate Chuck at Weill Cornell, a smart, authoritative doctor named Desai.  The results from the immunohistochemistry analysis of Chuck’s tumor—tests to examine particular genetic markers that may help determine prognosis—were finally available for him to study. 

The good news:  a genetic marker that predicts whether or not a tumor will respond to the first line chemotherapy drug for glioblastoma, Temador, were in Chuck’s favor.  Only about 45 percent of tumors exhibit this marker and Desai was ecstatic when he saw the results.  He explained the finding would confer an approximate 30 percent advantage to Chuck when compared to those who lacked this marker.  It meant, Desai said, that going forward Temador could be expected to be effective in killing malignant cells for many months. 

(Should Temador become less effective, another drug called Avastin, a monoclonal antibody that slows growth of new blood vessels— which fuel tumor growth—may be helpful.  Avastin, a.k.a. bevacizumab, has been used in metastatic colon cancer, lung and kidney cancer, and was FDA-approved for use in treating recurrent glioblastoma in 2009. After UCLA researchers demonstrated that year that Avastin improved “response and survival” in people whose glioblastoma had recurred, Weill Cornell’s John Boockvar, who runs a laboratory dedicated to conducting clinical trials for glioblastoma, experimentally gave such patients the drug using a technique to deliver the drug directly to the tumor site, bypassing the blood-brain barrier.  In 2009-2010, Boockvar’s team conducted a successful Phase I Avastin trial using their new technique in glioblastoma.)

So far, Chuck has been taking an oral dose of Temador without any obvious ill-effects for close to a week, with one additional week to follow.

Day Three at the Stich Radiation Center was mixed.  Chuck said he felt “dazed” after his session with the fencing mask—the “immobilizer”—and the machine.  He was obviously tired when he arrived home.  And he had one more session to follow on Friday.  That session, the fourth, seemed to finally deliver what the medical and radiation oncologists had been warning Chuck about for weeks now:  a serious dose of exhaustion.  His weekend has been spent resting, sleeping, and resting some more.    

There are two additional radiation sessions scheduled for next week, but the chemotherapy continues for another full week.  This is a critical period for Chuck; he needs to give these therapies a chance to work and that will be accomplished by bed rest, sleep, and more rest.     

The next milestone is likely to be an MRI in the coming weeks to measure the effects of the treatments described above.

I continue to urge cards and flowers as a way of expressing solidarity with Chuck at the moment.  He’s keeping a list of all who call, but has difficulty summoning the energy to respond to so many well-wishers.  Supportive emails are another option, but don’t expect an immediate reply just yet.

All best,

Hillary Johnson     

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