MDA Trial v3

We got back late last night from MD Anderson.  Maggie is doing surprisingly well.  She’s sleeping right now, which ain’t that unusual, but throughout yesterday and into the morning she was doing great.  Our MD Anderson experiences continue to disappoint.  I think I’m going to rename them from The Wizards to The Clowns and just call the hospital The Circus.  I’ve decided that their reputation for excellence is based merely on numbers.   If you treat a bazillion cancer patients every day, you get lucky occasionally and those lucky few make lots of noise.

The circus act started right off Thursday morning before we had even left town.  MD Anderson has this online schedule program where they post your appointments.  You, as the patient, are responsible for checking it regularly because it changes.  Spontaneously.  No one ever calls you to schedule appointments, ask your availability or alert you to any changes that occur.  They just update the web site.  Well, when we made plans for this trip with our new clinical trial coordinator, it was pretty clear what was going to happen – last appointment of the day Thursday with Dr. Folcheck then treatment all day Friday.  Pretty simple, right?  So we made travel plans accordingly.

Thursday morning, being the over-preparing husband, I logged on to My.MDAnderson.com, the online system, so I could print out Maggie’s itinerary.  Oh no.  What was on the schedule was different than we had been told.  But of course it was.  According to the schedule, she was due for blood tests and an EKG at 8AM followed by a doctor’s appointment at 2PM.  Did I mention I was reading this at 10:30AM?  Grumble.

Now, this seems even worse than it really was.  We’ve learned that just because the schedule says “Blood test at 8AM in Specimen Center B” it doesn’t really mean “8AM at Specimen Center B.”  It means “get a blood test at any specimen center at MD Anderson sometime that day, preferably two hours before your appointment.”  That’s important information to know because the MDA schedulers paint these blood tests on the schedule at bizarre times, like 6:30AM for a 4PM appointment.  Or at 4PM for a 9AM appointment.  So, ignore the blood test times and places.  Check.

But the doctor’s visit, that was bothersome.  It was hard enough to get an appointment and now we were going to miss it, potentially throwing the whole process off?  2PM is quite different than “last appointment of the day” or at least it is in my working day.  So we called the clinical trial coordinator.  She seemed unphased.  We took her lead (“we” being “me” since Maggie was never even slightly concerned), calmed down and went on with our day as WE planned it.

Maggie flew down via Angel Flight to Houston mid-day.  Dr. Adrianna (seriously, how many doctors and nurses do we know?) drove her to the small Lakeway airport.  The gentleman who flew her had nothing else on his agenda than to fly her to Houston and then fly back.  He even offered to take Dr. Adrianna along for the ride if she wanted.  She did not.  Maggie arrived at MD Anderson around 4-ish and, despite some long waits, got everything taken care off including the doctor’s visit and left the hospital late to eat dinner with Dr. Lisa and Katy.  Treatment was on.

Friday morning at 7:45AM she cabbed it to MD Anderson ($8 total including tip, what a bargain!) and, after being poked six times in various places trying to find a still-working vein, they started pouring fluids into her body.

Her treatment for this trial is called mFOLFOX6 plus Avastin plus the special sauce R1507.  They started with the special sauce first, around 10AM.  By 10:30AM Maggie blood pressure shot up and she began shivering. Having been through this before, she recognized the symptoms quickly.  These weren’t shivers.  These were rigors.  She was having an infusion reaction to the new drug, a situation that requires immediate medical intervention.

Sadly, I wasn’t there to care for her during this episode.  She tells me that the nurses stopped the IV drip of the R1507 and brought blankets to warm her up.  They paged all the doctors on Maggie’s long list of care providers, none of which returned their page.  Eventually they gave intravenous Benadryl to halt the reaction and Demerol to stop the rigors.  Slowly, things calmed back down to normal and they re-started the IV drip.  By then, still, none of the doctors had returned the nurses’ pages.

I finally arrived at MD Anderson at roughly 12:45PM.  I had time for a brief hug and kiss for Maggie when one of Dr. Kurzrock’s assistants showed up, all smiles.  “So you got cold and had some shivers, huh?  It’s probably from the fever you’ve had,” she said.  Maggie and I both quickly corrected her, trying to avoid spitting venom.  This here weren’t no “shivers from a fever” episode.  And it’s a darn good thing the nurses could handle the situation since it apparently takes more than two hours for a doctor’s ASSISTANT to respond to multiple pages.  Unbelievable.  I stand by my original assertion that we are merely experimental Petri dishes to the doctors at MD Anderson.  The assistant was just coming by to survey the damage to the experiment to see if it could be salvaged.

The rest of the day went on without any further trauma.  We had another nurse come in later and tell us that the reaction was because of her fever again.  I’m betting a dollar that some idiot wrote that nonsense in her chart.  Regardless, at about 7PM we were done and we headed to the car.  Maggie was breathing hard but otherwise alert, in good spirits and ready to eat some Indian food with Dr. Lisa.

We left the hospital a bit more encumbered than when we came in.  The FOLFOX recipe calls for the delivery of a nasty chemo drug called 5-FU, the second “F” in “FOLFOX,”* to be delivered over 44 hours via a take-home pump.  If you are keeping count, that leaves us with two pumps:  one for pain management and one for chemo delivery.  🙂 And they take different battery sizes.  Maggie is a walking mess of tubes and bags.  But she’s managing like a graceful ballet dancer in a hurricane.

* FOLFOX recipe:
“FOL” – Folinic acid (leucovorin)
“F” – Fluorouracil (5-FU)
“OX” – Oxaliplatin (Eloxatin)
Mix well. Serves 1. Take with food.

Sunday we will disconnect the chemo pump around 4PM.  The nurses seemed a little surprised that we/I will be doing the disconnect instead of someone with more of a medical background.  I assured her that by now we’ve got this down.

Bottom line is that Maggie’s doing great, surprisingly so.  She’s mobile, happy, and while not 100%, she feels fine.  Yippee!

11 thoughts on “MDA Trial v3

  1. Well, after yesterday I’m surprised that she can even smile. But that’s our Maggie. Can’t keep a good gal down for long. Go gittum Maggie. Looking for wonderful results from all that. So glad you’re feeling so good today. Hope you are both enjoying the chili cookoff. Wish I had a bowl of it right now. Much love to you both. Meme & BD
    Or is the cookoff tomorrow?

  2. I, too, am becoming more and more disillusioned with MD Anderson; however, if they can produce the reduction … or even better, disappearance, … of those tumors, I’ll keep my badmouthing them to myself for now. I’m so enheartened to learn that Maggie is doing well after all that mess yesterday! Thank God for small blessings!

    Sending you much love, continual prayers, and serenity! (Chris, maybe that serenity thing is for you … sounds like Maggie’s got it down.)

  3. Chris, I’m taking in every bit of the bedside mannor, or lack thereof, that Maggie has experienced. Specifically, the “so you’re cold and are shivering” situation. I’m telling myself now, while I wait to hear if I get to start nursing school in the fall, to ALWAYS listen to the patient and family and not just what is in the chart.

    I was a very sick patient for a year and a half (had my lg intestine removed and there were complications, and more complications, etc) and there were many times it was clear that I knew waaay more about what was going on with me than the nurses. Such as…”my body needs steroids now” instead of waiting for the withdrawal symptoms to come and freak everyone out.

    With every experience, you learn. I especially like it when I learn what NOT to do.

    Huge hugs and “prayers for patience” with the enormous MD Anderson machine.

    Love ya ‘tho I don’t know ya!
    Shawna

  4. We will not tire, will not falter, and will not fail….those words just keep running through my head. All of us are here for you guys, for emotional support, cooking, cleaning, crying, whatever you need. And we will never tire, never falter and never fail, until God has decided His will. We love you, we pray for you, and we send you good, calming thoughts from North Texas.

    Chris, as your sister and fellow “control” freak, I send you all of my thoughts and prayers. I don’t need to remind you of our deep faith and just want to remind you..”Let go and let God”. I know, I know, “pot? Hi, I’m kettle”. But as I read your blogs, I have the exact same thoughts that you do and feel the exact same tension in my shoulders and neck. How I wish I could take it all away and start things all over again. I would do it in a heartbeat, for you and Maggie. I love you and always will.

  5. She is feeling well! This is the day the Lord has made, let us rejoice!
    Love you so much even though I had not met you.

  6. Chris, you’re doing a bang up job taking care of our loved one. She’s the best and such a trooper. Keep fighting the monster and we’ll all keep praying for our miracle and for the medicine to do its dang job. We know the “C” responded to the same mix of drugs (minus the mystery juice) when she originally had them so why not again? Don’t let MD Anderson knock the humanity out of you. We will be glad to do any of those treatments they’ll let us do here on the homefront. I love this website and the dogs are way too cute. That big one thinks its a doberman!

  7. Happy Valentines Day, Maggie and Chris! Do the best you can in your lives, however difficult it is. I will keep praying for both of you.

    Love, Aunt Pat Valente

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