14. Were Now Underway With The ABT-199

Friday the 16th of November saw the final hurdle of the testing for the clinical trial.

This was a full day consisting of 15 EKG's.  That consisted of 3 done 2 minutes apart every other hour.

I know it sounds like an action packed day of excitement, but believe me I won't bore you with the details of this day!

But it was worth every minute as this was indeed the last screening test I had to pass to get into the trial that was to start the very next Monday.

It was a weekend full of anticipation.

I had gone through so much these last few weeks of testing/screening for this trial.  Not to mention the last 3 plus years of chemo therapy I have endured just to stay on top of this beast!

Monday November 19th 2012 could not come soon enough.  I barely slept that night, you know, kind of kid on Christmas Eve!

But the morning of the clinical trial finally got here.

This all started with a 5:00 AM wake up call, and a near 2 hour drive to Seattle in a torrential downpour rain storm.  Turns out that during this storm Seattle got more rain in one day than the months between June and September of this year.

We finally got to the Fred Hutchinson Cancer Clinic where I was to spend the entire day taking a single pill.  No it didn’t take all day for just the pill but all of the events surrounding this single pill.

It started with a 7:30 AM blood draw and lab work to see where the disease was at, and for a marker for the trial to judge my process on.

Then at 8:20 AM I ate a low fat breakfast that the trial coordinator had to witness.  This consisted of a bowl of low fat cold cereal and low fat milk, and apple sauce.  Turns out that the medication binds to low fat foods, so the body can absorb the medication a lot quicker.

Then at 8:50 AM I came down to what the trial calls 0 hour, day -7.  My vital signs were taken, then the first pill is taken, which is also witnessed by the trial coordinator.   I instinctively stuck out my tongue with my mouth open like Jack Nicolson did in One Flew Over The Cuckoo’s Nest to show I wasn’t hiding the pill under my tongue.   This got a good chuckle by all in the room!

Then came blood work and taking vital signs every hour for the next 4 hours, all of which was mailed directly to the trial lab that is funding the clinical trial.   These next 4 hours were very uneventful also except I was required to down a quarter liter of water each hour to keep the kidneys clear as the trial was expecting me to have tumor lysis which is where the body dumps a massive tumor load from medication in a short amount of time.

After hour 4 we got a 2 hour break and got to go have some lunch.  Because it was still raining so hard my wife and I decided not to venture out of the clinic and opted for a lunch in the clinics cafeteria, (which they amusing call a Bistro) consisting of a ham sandwich.  

Then came the first real side effect of the trial where about an hour after I ate I lost my lunch by a different orifice of my body that wasn’t on my head if you know what I mean!  J

But this quickly passed without any more unpleasant episodes like this one.

Then I had 2 more blood draws, a doctor visit and vitals taken then was asked to head on over to the University of Washington Hospital to stay the night for observation and to have my kidneys thoroughly flushed.

This became a night full of interruptions as I had my vitals taken every other hour with more blood work and labs done at the same time.  Plus they kept a IV full all night and the up to 2:00 PM the following day.

This is also where I really started to feel like a Lab Rat as the U. W. is a teaching hospital for oncology and 4 separate doctors came in to check on me followed by 4 to 6 students in tow to check me out, reading my chart out loud each time which was followed by mumbling by the students. 

I was originally scheduled to be discharged at between 11:00 AM and 1:00 PM, but have you ever know a hospital to discharge a patient on time?

Long story short, my journey with CLL Leukemia has now hopefully found its match with this new drug.  In a short 24 hours results are now showing:

A Partial Update On What The ABT-199 Has Done In Only 24 Hours

                          Before ABT-199                        24 Hours After

WBC                           10,500                                      8,180

(this numberis significant as 2 weeks ago the WBC was 5,150 showing how this disease was starting to escalate once again)

Lymphocytes    5.88 THOU/uL                            4.41 THOU/uL

Hemoglobin          13.4 g/dL                                      12.7 g/dL

Tomorrow November 21, 2012 will have more blood/lab work done.  Then I will go back on Monday November 26, 2012 for blood/lab work, a doctor visit, then I will get a week’s worth of the ABT-199 which I will start taking every day at that point.  With instructions on how to take the pills.  The first pill on the 19^th was 50 mg.  Next Mondays will start at 50 mg a day again, but the dose will start to go up until I get to 1,200 mg a day, which I am told could be by day 21 or day 28.  I am told that I will be the first Lab Rat to get such a large dose, as the biggest up date has been 800 mg a day.

Thanks for putting up with my rambling!

Never, Ever Give Up!