good day and good news, my cohearts

I had projected that this visit to Dr. Gore might bring good news. and it turned out as good as I anticipated, maybe a little better.

to start with, she's great. in the running for my favorite doc yet. present, personable, knowledgeable, hopeful...and a Sondheim fan.

the drug in the the study is indeed Nutlin-3, the one I read such great things about online, and the study is being conducted in conjunction with M.D. Anderson in Houston, Harvard medical center, Sloan-Kettering in New York, START in San Antonio. she teleconferences weekly with them, and I get the sense that she's on top of whatever research is going on out there.

yes, it's an oral chemo. drugs to counter the side effects are not necessary - no decadron, and read my lips - no neu lasta.

in the consent form, there are six pages of side effects. they represent everything that anyone in the study has ever reported. I feel realistic about discounting most of them. one man reported prostate trouble...he was 75...we don't think the drug necessarily caused it...

the typical side effects are...surprise...fatigue, nausea, and loss of appetite.

but, she said, she would be very surprised if the new regimen wasn't less difficult than the Yolandis treatments.

such good news.

the study is a phase 1...but at the "tail" of it. that means they have a pretty good idea about the dose, the length of a cycle (a month instead of three weeks), and the side effects. I am very very lucky about that. Dr. Gore says that she has had people on Nutlin-3 for up to two years.

she also used a surprising phrase.

she said, it is exciting to think that we may have our finger on a possible achilles heel for cancer.

this drug is being used in studies on a number of different types of cancers, including leukemia. the p-53 thing seems kind of basic to a lot of different cases.

people who conduct studies should have a hope that their findings could change the world. but I think I'm going to let myself have a little of that hope, too.

I'm going to need to log more hospital time than before.

day 1, they watch me for 8 hours. day 2, a quick visit. day 5, 8 hours again. day 6, a quick visit. (yes, Saturday). then labs on day 15 and 22. that's for the first two cycles. there's a scan every two cycles as well.

a lot of time in Aurora.

back in the 70's, when Aurora Mall was new and Aurora was filling western Kansas with thousands of shiny new condos, the trees had just been planted, and Parker seemed like a whole separate town.

it was fashionable then to pick on Aurora...I remember a humorous song sung at a hoot at the Oxford Hotel, in which the real reason weather moves from west to east here is that, "friends, Aurora sucks!" it was seen as a tangled, soulless non-community, a roach motel that it was easy enough to drive into, but impossible to check out.

in the more enlightened post-millennium, where Aurora Mall has become a graffitti marked ghetto center and traffic makes time stand still, the Aurora of the seventies has become sorely missed.

I promise I'll drop a trail of bread crumbs on my way in, so I can find my way back out at the end of the day. they certainly have a nice distant view of the mountains, though...

my intuition was right about the study, too, in that there is no shortage of slots. whereas the study originally included many types of cancer, now it has redefined its focus as only sarcoma patients.

amazing.

so in all 5 study centers...24 patients. two currently in Denver.

yeah, they have room.

Dr. Gore said, you're sick of hearing this by now, but what you have is very very rare.

in any field of my life, I've never seen the view from the top of the bell curve. I've always been your Standard Deviant, in the far out 1% of the tail.

so I won the lottery you never want to win...but I also won big time, being someplace that has a connection to the forefront of sarcoma research.

so that hurdle is crossed.

the second...the needle biopsy...Dr. Gore, best as I recollect, described it as finding out if I have the right kind of p53 or not. different from Dr. Elias' description, about whether the cancer has mutated already or not.

so, not sure of the nature of the test. but I'm sure I was told there's a 50/50 chance of being a candidate for the study, based on the biopsy results.

now, this is the sheerest projection.

but... read what is said about p-53...

If a person inherits only one functional copy of the p53 gene from their parents, they are predisposed to cancer and usually develop several independent tumors in a variety of tissues in early adulthood. This condition is rare, and is known as Li-Fraumeni syndrome. However, mutations in p53 are found in most tumor types, and so contribute to the complex network of molecular events leading to tumor formation.

my dad had a lump in his neck that I remember he had an operation for. not so many years later, he died of what they called lung cancer.

if I had to put smart money down right now on whether this ultra-rare cancer I have was genetically linked to my father possibly having the exact same cancer...I'd make the bet.

and the possibility that it's linked to inheriting only one functional copy of p-53, and that not only would I qualify for the study but maybe get striking benefit from exactly this therapy?

I'd be a real Nutlin case not to think it might look just that way.

biopsy results take ten days to come back. so, darn it, I don't get to experience any side effects for maybe another two weeks. guess I'll just have to keep getting stronger.

I know. if I could start tomorrow, I would. my shoulder is starting to hurt from the tumor. my guitar playing sucks...fortunately, it's really hard to say if it is worse than it ever was. I am aware that, if I start feeling effects from the cancer, it will make the days when only the cure affected me seem like the good old days.

which they were, and are. good, good days.

I'm a little too important for my taste this past week. guiding Elena's project in for a landing, doing the Lost Alamos concert tonight, getting more involved in the UnAssisted Living project, Modniks coming back on line, ReJuveniles playing again on May 21st...and the usual assortment of other projects, gigs, and rehearsals...there have been actual phone calls I've needed to take. too important for my taste.

but May.

the month of permission. May I? You May.

the month of possibility. I May yet kick this thing.

Cinco de Mayo. (literally, I'll take five with mayo, please)

this month, even before I see any docs, I'm enrolled in the Mayo clinic. the renewing powers of spring.

Promise of Spring...that's the title of Elena's CD, over a decade and a half in coming out. and the chorus says,

times are uncertain/ who knows what tomorrow may bring?/ but the muddy earth promises Spring.

"Colonel Mc Croskey, this is Ted Striker. Mayday! Mayday!"

"Mayday? What the heck is that?"

"Mayday? Why, it's the Russian New Year! We can have a parade and decorate a big pole..."

it's April 30th...not time to say mayday yet. the business of my life for the next two weeks will not be the business of preserving life, but instead the business of living.

good news

a little entry for a little good news

on Monday Laurie, Dr. Elias' nurse, said that the doctor on the new study would get back to me in a couple of days

today, Friday, I decided to give Laurie a call. left a message.

Laurie called back in a few hours. but by then I had heard back from Dr. Gore's office, and had an appointment for 11am Thursday the 28th.

I am thinking that they wouldn't have make make an appointment to tell me, sorry, there's no room in the study.

so I'm going to pretend I'm past one hurdle.

I'll hear all about the second one, the needle biopsy, at the appointment, I'm guessing.

Dr. Nemechek had called a week or so ago, and I poked my head into his office right after. I wrote a long email to Jane, the very caring front desk woman at his office; the next day, Andy called again and I was able to speak with him.

he said they did needle biopsies all the time, that they can be useful...this is the guy who said, hearing about my biopsy at our first meeting, "you don't poke it with a needle!!!" but he tends to make blanket statements and later blanket retractions...

if the drug they're talking about is Nutrin-3...and Dr. Nemechek said it is...there's some amazing stuff about it online. in lab tests it's been 93% effective.

Dr. Nemechek also said, a good resource for finding cancer studies is the NIH-NCI site, which lists all federally funded cancer studies. (not those sponsored by drug companies)

I think the more we know, the more we know.

and finally to the important stuff...gee I sure hope some folks come out to the Lost Alamos show the evening of April 30th at the Harmony common house in Golden. Brian and Vicki are wonderful, talented, crazy people, and no one works harder than they do on their performances. you get some sense of it on our YouTube videos, but last show we needed 14 instruments to get through it. we're hard on instruments. no, not like Pete Townsend, but the results are smashing...

more later

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."