Monday, April 18, 2011

plan E

the new plan of attack.

the first word out of Dr. Elias' mouth today after he saw Friday's scan was, "unfortunately..."

the growth of the tumor on my shoulder had seemed to unsettle him three weeks ago.
today, he said that some of the tumors in my lungs looked similar to the last scan, even the same, but some were growing.

the results were not good enough for him, and he recommended choosing another course of action.

there is a doctor at UCH, he said, who is conducting a phase 1 study of an inhibitor inhibitor.
he got a big kick out of that.
p53, says wikipedia, is a tumor suppressor protein that is called the "master watchman" for its role in preventing mutations.
it is inhibited by mdm2...and maybe you can learn more about that from wikipedia. I couldn't make head nor tails of it...
the new drug inhibits mdm2.

Andy Nemechek seemed almost a little contemptuous of Yondelis, the drug I was on in the first study...said it was traditional chemotherapy, as it had been practiced since the forties.
when I asked Dr. Klancar about Andy's statement, she said he was less impressed because it wasn't a "glamorous biological agent".
I don't know one of those from Maxwell Smart, but it sure sounded alluring.

the new drug in the study, which I have yet to find the name of, seems like a glamorous biological agent.
and I...yes, I...am making some assumptions.
firstly, that it's not infusion like the last two but probably an oral pill, like the serofanib I was close to going on.
second, that there is some chance that using it does not involve either decadron, the steroid I've had since november, or neulasta/ neupogen, the neutrophil stimulant containing e coli.
wouldn't it be nice if that were the case?

now, there are two barriers to beginning the treatment on the new drug:
1. it's a phase 1 study.

  • Phase I trials: These first studies in people evaluate how a new drug should be given (by mouth, injected into the blood, or injected into the muscle), how often, and what dose is safe. A phase I trial usually enrolls only a small number of patients, sometimes as few as a dozen.

  • Phase II trials: A phase II trial continues to test the safety of the drug, and begins to evaluate how well the new drug works. Phase II studies usually focus on a particular type of cancer.

  • Phase III trials: These studies test a new drug, a new combination of drugs, or a new surgical procedure in comparison to the current standard. A participant will usually be assigned to the standard group or the new group at random (called randomization). Phase III trials often enroll large numbers of people and may be conducted at many doctors' offices, clinics, and cancer centers nationwide.
so there aren't many slots, and there may not be any. Dr. Elias said that the study was at the end of phase 1, moving into phase 2...it would be nice if they had pretty good ideas of the effective dose, timing, etc.
I'll hear from them in a couple of days, with more info on the availability of openings. and I know Dr. Elias will pull all he can for me.

2. a biopsy needs to be done on a tumor. if the tumor has already mutated, said the doc, the drug will be useless.
fortunately, a needle biopsy will suffice, going into the lungs not necessary as there's a barely subcutaneous tumor on my shoulder. you never know just how you're going to get lucky...

so...the new drug...perhaps more of a gamble, but perhaps for more of the marbles. Doc E says the study has already had good results on sarcoma, my rare variety of cancer, and that 50% of the patients? students? participants? poor wretches? had responded to the drug, with stabilization or.......he trailed off.
so possibly better outcome on the output end and less damage on the input end.

lot of guesses. I don't know.
one thing I do know: the study requires you "washout" any other drugs for four weeks. it's been three since my last chemo.
so I will have no Yondelis side effects this week.
forgive me for rejoicing.

I have been making men and women cry all day telling them this turn of events. it was a good six weeks indeed, while we all felt the present drug was shrinking the tumors.
but I...the guy with the down weeks from Yondelis side effects and the tumor on my shoulder that both Elias today and Nemechek weeks ago said any surgery upon which would wreck my shoulder...I am thinking this new gamble may be for more of the marbles, on both ends.
maybe maybe maybe.
so I am holding my tears a bit longer.

the last six weeks, I have been focusing on my life rather than life, on living rather than staying alive. thinking about longer time frames, and feeling my way of life more like I used to. more, what will I do to get through the summer, less what if this is my last summer?
today, the appreciation of the day seems full of the possible limitation to the number of days.

but the trick I seem to need to learn, more and more, is to prepare for all of the best and all of the worst life has to offer all at once.

quite some trick.

tantamount to playing a Beatles song, with John and George gone...a Who song...seeing The Dead without Garcia, Pigpen, Brent Mydland, Keith Godchaux, or Vince Welnick...wholly leaving out mention of the Allman Brothers, Lynyrd Skynyrd, the Rolling Stones...

I play those songs all the time, smiling.
the songs are not gone.
art is not the only way we are not gone when we go.
we will always, always, always have been here.
and as another famous Doc, Brown, says over and over to Marty McFly, don't do anything, don't talk to anyone, don't look at anything! everything we do in this time changes the future forever, in ways we have no way of predicting.

surgery, radiation, adriamycin, yondelis,

now plan E will change the future.

p.s. I second Woody Allen, who says, "I don't wish to achieve immortality through my art. I wish to achieve immortality through not dying."

2 comments:

  1. The trick is knowing that someone knows what to do if the worst should happen and then moving on to living your life as if it won't happen. You know now, more than ever before, that life is finite and that the end will probably be sooner than later. So now you live to your fullest purpose. You live life fully, no regrets, no doubts, no negative thoughts. You have fun every day. You do all the things you've wanted to do but thought you could do later on. In other words, Scott...You live your life with intent and love. Nothing less will suffice.

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  2. "Dum spiro, spero."

    Loosely translated: "While I breathe, I hope."

    — Cicero

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