More Details from MDA

In keeping with the MD Anderson fiasco-way of doing business, Dr. Kurzrock was roughly two hours late for Maggie’s 11:00AM appointment.  And, of course, she came with her clipboard touting entourage.  They dialed me in via speaker so I could virtually participate in the discussion.  Here’s my report.

Dr. Kurzrock was unimpressed with how the current treatment was progressing.  In fact, she opened the discussion with a clearly guarded “how are you feeling?” expecting a different response, I suspect, than Maggie offered (“I feel much better than last time!”)  She said that the liver situation was still of great concern and while some tumors had decreased in size, others had increased.  She said she believed that a new treatment would be a better choice.

The treatment she has recommended, and we subsequently signed up for, is titled “Administration of BIIB028 to Subjects With Solid Tumors.”  It’s a very small Phase I trial with only about eight people currently enrolled.  Yessir, this stuff is hot out of the lab.  The juice doesn’t get much fresher than this.

The drug with the memorable name BIIB028 is yet another of the new, targeted types of chemo, much like three other drugs we’ve received previously: Avastin, Erbitux, Vectibix.  This is all part of the brave new world we’re living in today thanks in part to all the hard work of the Human Genome Project.  Next time someone donates their body to science, make sure to give them a post-humus slap on the back (but not too hard, depending on how long ago they, uh, donated.)

BIIB028 is a type of drug called a HSP90 inhibitor.  And stuff just gets deep from here.  Basically, think of the tumors as tables for of hungry people (cells) in a restaurant.  HSP90 would be the waiters that bring the tables the food (protein.)  BIIB028 kills off the waiters causing the tables to go without food and, hopefully leave without tipping.  Or better, die.  If you want a more learned description, for those smart-um folks in Dr. Carrie’s class, check it out here for the best I can find.  If anyone can find better, I’d love to learn more.

The kick-in-the-pants, at least for us, is that the study requires a visit to MD Anderson twice a week.  Yikes.  And, no, they can’t/won’t let us take it somewhere in Austin because of blah, blah, blah, procedures, and blah, blah, blah, regulations.  So, yeah, twice a week to Houston for the next six weeks…

Here are the good things about this treatment:

  • The only noted side effect has been slight nausea the day of treatment.  No big-time, days-long yuck like the others.  The first time she’ll stay the night in Houston just in case we discover a new side-effect.
  • No overnight stays.  Just do the deed and come home.
  • I’d assume that hair-loss is not an issue since this is targeted treatment.
  • No surgery like she’s been getting and, best of all, no miserable five day hospital stay every three weeks

Her first appointment is scheduled for January 12.  She’ll need to be at the hospital all day and stay the night in Houston for this first treatment.  The trial coordinator said to expect a pretty long day (as if we’ve had any SHORT days at MD Anderson!)  I almost snorted into the phone.

We’ll get new scans to see if the treatment is working in six weeks, just in time for our fifth wedding anniversary.  Boy, what a great gift we could get!

10 thoughts on “More Details from MDA

  1. I can drive Maggie to Houston and stay. I’m only out of school until the 20th, but I’d love to help! Love you both. A new year will bring good news.

    1. Thank you for the offer. For the first trip, I’ll be driving her. It’s important to me that I’m there just in case until we learn what this new stuff entails. But before school starts on the 20th I count two more opportunities! 🙂

  2. I can help after 20th … or, really, whenever you might need someone to drive or do laundry or keep house …. whatever. I’d love to be able to do something to help.

    Many, many, hopeful thoughts and prayers ….

  3. Thanks for the nod, C. I got an “A”. =o)
    The new drug sounds very interesting. I’m gonna ck it out.
    Bummer on twice/week visits, but I’m with you on no 5 day stays every 3 wks!

    I saw the Christmas picture with everyone on the couch. I bet you had many memorable and lovable times together.

    I’m thanking God that you are alive and doing well, in spite of everything, Maggie!

    The best is yet to come!
    Love and hugs,

  4. Leslee had a great idea and I would love to offer my help. If I could relieve you on one or more trips, please let me know. I am sure others in the office would be there for you by covering my docket if needed. It would be such an honor to be able to help.

    1. Thanks, Michelle, for your offer. Maggie and I are putting together a plan that may well entail a little help from our friends with this. More details to come soon.

  5. My husband and I live on the north side of Houston, near the Woodlands. If ya’ll ever need a place to crash, let us know. (I was in Maggie’s graduating class.)

  6. I am so glad to hear you guys had a nice Christmas and New Year together. I have done some catching up on your adventures, found myself crying and chuckling and praying for you both. David and i would love to take Maggie to Houston on any day you need help. David’s parents live there so it is not an inconvenience at all…I am part truck driver so the drive is nothing. We are here for you and want to help, please use us.
    Keep your spirits up and keep fighting! Give each other a big hug for me. All my love to you both

  7. Hi Maggie and Chris. I am a five year cancer survivor with GIST cancer. I am looking into a BiiB028 clinical trial. I went through a trial at MDA last year but live in Calif. This trial is also in L.A.Ca. MDA is the best. Can you tell me if you are having any luck with this drug. Side effects etc. You have new prayers coming your way. Cancer is no fun.

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