Monday, March 2, 2015

The First Day of the Pre-Clinicl Trial Journey

We had a the worst drive to Houston to date. We woke up in Illinois with close to 6 extra  inches of snow on top of what we had. We drove 30 mph all the way to Salem...then 40-45 on I 57 all the way to Marion, Illinois. It put us at least 2 hours behind the already long 14-15 hour drive.

It's Monday morning and I have blood work at 12:45 at MD Anderson...then start the CT prep at 2:20 (you drink a lot of the nastiest tasting chalky pasty stuff I have ever had in my drink a little here...wait a bit...drink more, etc........but I can do it...because I AM STRONG)! Then we move to the scan room scheduled for 4:20.

Tuesday....I see Dr. Javle (who is the doctor ahead of the trial) at 2 p.m., and then I have an echo cardiogram at 3 p.m.

Wednesday & Thursday, I am appointments! But it's like 45 degrees down maybe a movie is in order OR  IKEA!!!!!   Maybe a visit to the Morris' family...

Friday.....I have an opthamology appointment as this trial is watched cautiously as it could cause problems with the eyes and even cause blindness. It has not happened to anyone but if I start to get blurred vision, I could be "CHOPPED!!"  :-(

I have to pass all the above tests before I can enter the trial ( So....if my heart has a problem, we will look for a different trial....or figure out a new "detour" but I have faith I will be ok.

Next week, if approved, I will have blood work on March 11th & 12th. This is the week I will start the clinical trial beginning with a pill you take for 21 days and then you are off the pill for a week. I will also take a pill to keep my phosphate level in check. There has been a little bit of problem with patient's levels getting too high so the dose is lowered...and if that doesn't work, they take you off of the pill and maybe give you a break for a week or two before putting you back on it.  I will go back on March 18th, 25th, 31st and April 8th for blood testing for the trial. This is how they will track our phosphate levels. During this time frame, I will stay here in Texas close to MD Anderson.

 I will be on a very strict diet. No more chocolate peanut butter cups from Roll With It :-( more wheat products, milk products, chocolate, etc. Basically a gluten free, soy or rice milk only, chicken, steak, lots of fruits and veggies.  Thank goodness I have been "filled in" about stores like Sprouts, Trader Joe's, Whole Foods, and even Walmart has a lot of organic, gluten free stuff. Also some Mexican grocery store that has awesome veggies at good prices. We'll have time to start it, ask questions, and even see a nutrition specialist at MD Anderson if I choose to do so.

 I will come home for a month before returning May 6th for blood work and to see the dr.  There will be appointments added into all of the above dates but for now, this is all I know about. Probably lots of vision checks will be added and visits with Dr. J, too.

We are staying in Tomball, Texas but it is just as crazy busy as Houston. I actually feel like I AM still in Houston. It will be a bit of a drive into MD Anderson but we are staying with Linda Burgener (a native of my hometown and whom I have known forever) who is gone on business right now so all we have for company is her dog, Blondie Kate. She's a hoot so far!!

I'll keep you all posted as much as possible. The trial MAY cause fatigue, slight nausea, and maybe some hair loss. Everyone is different so I will meet it head on WHEN and IF it happens to me!!

Feel free to send cards, letters, etc. to us at Patty Corcoran  c/o Linda Burgener at 11740 Northpointe Blvd., Apartment 2803, Tomball, Texas  77377.

Prayers are needed all the time.

God Bless~~you and me!


1 comment:

  1. Patty! You've got this. :) Sending tons of thoughts of strength and perseverance.

    And if you need a pick-me-up while you're there, find yourself a Tomball cheerleader; they have ROCKED since I first saw them in 1991!