To the Next Trial

As Nurse Jolie pointed out, we’re done with the twice-a-week-in-Houston trial.  I can’t say I’m too sad about it.  Just two weeks of that chaos was enough fun for me.  But, no time to rest.  We hit the ground running and have already signed up for another.  Unfortunately, it’s back at MD Anderson but we and Dr. Loukas think this is the best one available right now.  It comes with different challenges but the travel requirements are much more reasonable.

The blood tests on Tuesday showed that Maggie’s GGT enzyme came back at 800, down substantially from her previous reading of 1100 (normal is a factor of one hundred lower at 8 – 80).  However, they still wanted her out of the trial.  Turns out, her permission to join the trial was given erroneously.  With the pre-trial elevated GGT levels we had we should have been excluded from the start.  A chain of errors let us in.  All we needed was the one big jump in the GGT to have the MD Anderson folks open their eyes and pay attention.  Once their seemingly unbelievable oversight was spotted we were out.  Of course, this is what the left hand is telling us.  Who knows what the right hand is thinking.

We met with Dr. Loukas yesterday.  He said the CT scan showed the cancer continued to grow.  Big ol’ surprise there.  However, at the location of neck pain on the back right side, nothing worth noting showed up.  All the money spots were on the right side, of which there were many.  Short story, we need some knock down and soon.

Wednesday and Thursday I spun up the “find clinical trials” machine and got us appointments for Monday and Tuesday.  Mary Crowely in Dallas on Monday.  CTRC and START in San Antonio on Tuesday.  Of course, by Friday morning, MD Anderson had yet to give us final word that we were even out of the BIIB028 trial.  We were working off of innuendo and rumor.

Finally, Friday we spoke with a Dr. Falchuk (not sure on the spelling of his name.)  He explained his version of why Maggie should have never been in the BIIB028 trial (the version I mentioned earlier.)  As a consolation prize he also offered up a new trial which (and this is important) we could start next week.  Typically, clinical trials require what is called a wash out period between trials which last for a number of weeks, sometimes up to four.  It’s fairly standard and we can safely assume that any trial we’d be eligible for, MD Anderson or otherwise, would require a four-week wash out.  Yikes.  Four weeks is a long time to sit on the edge of your seat.  My cheeks tend to cramp up.  But, for some reason, this trial allows us to get it on.  Thus, we have an appointment next Thursday for a Dr.’s visit and Friday for our first treatment of the new trial. 

The new trial will have some elements we’ve had before.  It’s basically FOLFOX plus Avastin with some special sauce.  Oxaliplatin is the base, again, which is the chemo drug that causes cold sensitivity and temporary nerve damage to the fingers and toes (peripheral neuropathy.)  We’ll also be getting Avastin as a chaser, which we’ve had before, too.  The new juice, the one we hope kicks things into high gear, is called R1507.  Catchy name.  Just rolls off the tongue.

I’m not sure how big the trial is but we’ll be in the first batch of folks meaning we’ll get the lowest starting dose.  It’s a Phase I again so the idea behind the trial is to test toxicity, not efficacy.  Basically, they ratchet up the dose until someone complains.  Or croaks, I guess.  All in the name of science.  It really is the ultimate poke-and-ask-you-if-it-hurts test.  It’s kind of funny, really, if you think about it.  All these extremely educated people, watching over their clipboards, poking us to see if it hurts.  Didn’t I read about something like this in some alien abduction reports?

Fortunately, we ain’t the first pigs to the trough.  R1507 has had some good results in at least one trial.  I can’t say I understand how it works or why it might help the oxaliplatin/Avastin combo work again.  The important part is that if it works, it will work quickly.  We’ll know within two or so weeks.  If it doesn’t we can cut our losses and move to something else.  A quick “don’t work” is better than a long “maybe it’s working, maybe it’s not.”  We need a quick base hit.

One tough part is that, work or not, we will be back to the ol’ chemo days where treatment knocks Maggie down pretty good.  It’s a solid three days of post-treatment yuck.  I suppose we’ve handled that before and we can do it again.  Still beats trying to get back and forth to Houston twice a week.  That sucked.

I hope Mary Crowley, START and CTRC aren’t too upset at me canceling our appointments next week.  We may need them later.

11 thoughts on “To the Next Trial

  1. I read somewhere that scientific research is basically seeing what _doesn’t_ work. So with that in mind, I think the odds are definitely FOR this new R1507 working miracles!

    My angels are sent to you both everyday to bring you strength and serenity. I am only one among many whose thoughts you never leave. Prayers unceasing continue …..

  2. I think that it is fascinating how these experimental trials that seem to be so difficult and complicated to get into, seem to be falling into Maggie’s lap one right after another.

    Mom, that quote is actually by Einstein, but don’t have the actual qoute on hand. But essentially, being from research myself…We do research to find out what doesn’t work to do the one thing that DOES work! Maggie, you are part of history! And whether it “works” or not does not mean that it is not a “successful” trial. Because most scientific data is negative data.

    All our thoughts and prayers are with you….love always. Carson made a card for you, I’ll send a pic. Too cute!

  3. ah, yes….

    “If we knew what we were doing, it wouldn’t be called research.” Albert Einstein


  4. Thanks for some positive info! I’m with Lori, anything you need, count me in. This is such an emotional roller coaster. My mothering skills took a hit with the trip to MD in December, but I’m back up for the next round.

    Sending love and good vibes to you both.

  5. I am so happy that you are on a new trial so soon! This makes me very happy. Keep kicking cancer-butt. I will be thinking about you.

    Love, Eli

  6. No one else rolls with the punches better than you guys!
    Thank you for being the amazing couple you are.
    “Ahead…Full throttle.”
    ~Captain Kirk

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