Monday, December 10, 2012

18. Update after 2 weeks in the daily trial

I had my weekly blood/labs/doctor visit today at the Fred Hutchinson in Seattle for the clinical trial I am on.


I had my weekly blood/labs/doctor visit today at the Fred Hutchinson in Seattle for the clinical trial I am on.


A Partial Update On What The ABT-199 Has Done In Two Weeks Have Been On This Drug Daily


Day one of taking the daily ABT-199 pill versus 2 weeks later of a daily pill

``````````````````````````````````````````````````````````````````````````````````````````````````````

WBC 11,870 ~ 5,670  (Normal is anywhere between 4.3 and 10.0)

(Also significant as my WBC went from 8,100 to 11,870 in one week after the 7 day wait from the first pill to taking the daily pill) 

Lymphocytes (ALC) 7.84 ~ 2.38  (Anything over 4.8 is considered high)

Some very good results in only 2 weeks of taking a daily pill!! YAY!!!!!

The first week was 50 mg a day, the 2nd week was 150 mg a day. And tomorrow, the beginning of week 3 will have me at 1,200 mg a day.

I asked the trial coordinators why they were picking on me as the biggest known dose they know of is 800 mg a day. They smiled and said yes we are, and because partially Abbott (who is putting on the trial), said I was the youngest and healthiest, without other underlying health problems, who is currently on the trial with the 6Q, 11Q and 13Q deletions. And with an un-mutated status showing CD5, CD20, CD38, CD19, CD45.
Did I hear BINGO out there?

I asked about the ones on the trial with the 17p, but only got an answer that I was over 10 years younger and much healthier than those. (Ha, calling someone with CLL/SLL healthy?). So I guess I get to be the lucky lab rat?!?



My new breakfast of champions.

Two 300 mg pills of Allopurinol (with a low fat breakfast, usually a bowl of oatmeal),


Then twelve 100 mg pills of the ABT-199 all within 30 minutes of eating the low fat 

breakfast,  (plus it takes just bout a full bottle of water to down the 12 pills!)

Needless to say I am FULL!! 


Bonaparte......................

Monday, December 3, 2012

17. Boring Updates!

I had my follow up visit at the Fred Hutchinson Cancer Clinic in Seattle for the clinical trial I am for the ABT-199, for the Leukemia I am batteling.

The doc's PA actually said I am a boring patient!
I guess boring is good. As numbers continue to be stable and have gotten a smidgen better.

So now its time to triple the dosage I am on from 50 mg a day to 150 mg a day. They are confident that this will trigger a little better response.

Then next week the plan is to bump it right up to 1,200 mg a day. Again, I will the only person to get this big of a dosage to date, so it might get interesting!

Also got a little good news that they will now allow me to go to a the local clinic 15 minutes from my home for blood work/labs tomorrow and Wednesday instead of having to make the 2 to 3 hour round trip trek to downtown Seattle in rush hour traffic unless I need to see my medical staff, and the local clinic will fax results and Fed EX test sample to them from there. Gonna also save me a little sanity on the freeway during the local storms we have been getting lately!

So now its time to see how this lab rat does on bigger doses of this experimental drug. The trial coordinators, PA, and I were joking that I might show up next week with a 3rd arm, or be able to pick up radio signals from mars! LOL!

Never Ever Give Up!

Monday, November 26, 2012

16. Were Cruzing On The Highway To A Cure Now!


I went in to the Fred Hutchinson clinic today, November 26, 2012,  to see Dr. Pagels P. A. and the trial coordinator after having blood work/labs done, and  were now officially off to the races on the ABT-199 clinical trial now as I went home today with a bottle of the pills.

I was told everything looked great from the first pill I took last Monday up to today.  They went as far as saying something about wanting to clone me as a patient. 

I guess a few people are getting fed up with having to wait so much and having to jump through so many hoops to get this trial drug going they simply voluntarily drop out by this time frame in the game.

I ask myself why? 

Why would someone who has failed most main stream treatments plans with either a refectory CLL/SLL or Lymphoma who gets accepted into a trial of a drug like this just up and simply drop out after investing so much of their time and themselves into something like this?

Do some of these people simply give up, go home and wait for the end?

Are some of these people afraid of using a drug that is so new that less than a handful of people have used, they decide to go back and try something a little more conventional, meaning something that didn’t work for them in the first place?  Even though this drug is doing such wonderful things for the people who have been on it so far?

Maybe some of these people decide they don’t want to be under such a big microscope?

Maybe this is why they make us little lab rats jump through so many hoops and run through so many mazes and take so many tests.  To prove we want this!

Myself? 

Retreat Hell!  I just got here!! 

I’m here to fight!  I’m here to win! 

I have a “golden ticket” now!

I’m here to put a lid on this beast “Leukemia/Lymphoma” once and for all!

I am doing this not only for myself, but for my wife and kids, for my grandkids, for my family and friends, and those coming up the path to fight the best behind me.

FCR chemo treatments, oral cytoxin chemo treatments, prednisone treatments, and 6 months of  infusions of Bendamustine/Rituxan treatments, may not have done the job for me.  But these last three years of taking these drugs did prime me, and enable me get to the point I am at now!

The gloves are off now cancer, you have met your match!  Time to kick some ass!

Never Ever Give Up!

Sunday, November 25, 2012

15. Day PLUS 5 On The Clinical Trial



So far so good on my adventure on the clinical trial ABT-199 to help get my Leukemia under control.  And all with little side effects.

No nausea what so ever.

But the first few days after I took the first pill I experienced a little light headiness, (a little
like having chemo brain for those of you who know what this like), along with a mild head ache. But this went away last Friday the 23rd , which as of then I have actually been starting to feel better.

One thing I know is that I have not been able to eat as much as I usually do even though my appetite has been good, as I get a fuller feeling faster.

Could be it has to do with some tumor lysis filling my spleen up with dead cells?  As if it wasn’t swollen enough already!
Oh well, I am the first to admit I can stand to loose 10 to 15 pounds!

Week two on this trial starts tomorrow Monday November 26th.

I will go in for blood work/labs at 1:00 PM Pacific time, then I see the P. A. and the trial coordinator at 2:00 PM, where they will look at the most recent labs and compare them to the previous labs taken both before, during and the days after the first pill to calculate my next dosages of the medication.
Then I will most likely be leaving there with the weeks worth of meds to take at home.
I also go back in on Tuesday and Wednesday of this coming week for additional blood work/labs.
Then I’ll get to do this all over again on Monday December 3rd.

Looking forward to getting this show going on a regular basis now!

Never Ever Give Up

Tuesday, November 20, 2012

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 19th 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!

Wednesday, November 7, 2012

13. Another Day Of Testing Gone By!


Another day of testing for the ABT-199 clinical trial to treat my Leukemia has gone by.

I didn’t have to be at the clinic near as early this morning as I did on Monday so the worst of the morning rush hour of Seattle had gone by and I made the drive in without a hitch.

When I checked in at the reception desk they saw I was scheduled for a CT Scan later that day after I got the MUGA test, and she told me they could do both tests a little closer together.  This way I didn’t have to wait for the four hours that was originally scheduled between the two tests.  This sure sounded good to me not to waste half of my day in the waiting room.

I was then taken into the prep room where they put an I. V. line put into my arm where they did a saline flush, I have gotten to the point now where I can taste the saline when they shoot it into my veins, and I got to tell you this stuff tastes terrible!

A little bit later the Imaging Tech came in and explained the procedure to me.

First they took a large vial of my blood and have you witness that they put your name on the vial. 

Then he went into a work area with the blood he took and has a nuclear grade radioactive agent mixed into the blood.

When he was doing this a nurse brought me a new type of pre drink for CT Scan, as at the Fred Hutchinson they have done away with Barium and use a new type of contrast mixed in water that has no taste what so ever.  YAY!   All you do is drink a half liter of it an hour before the scan. 

When the Imagining Tech was done mixing up the brew with my blood he came back for me and had me come back to where the imaging was done at.

He had me lay down on a bench and flushed the I. V. line again, YUCK!

Then another tech come to verify that the blood mixed with the nuclear radioactive  agent was indeed mine, and injected it back into the I. V. in my arm.  Then had me wait for the goodies to work their way into my blood stream.

Then they have you lay still for about 10 minutes while the first image is taken of your chest.  This is basically a very large fancy, and expensive camera that takes a picture of your heart where the nuclear radioactive agent has made its way to.

This is repeated 2 more times with images taken at 2 other angles. 

When he was all done he gave me a paper that I am required to carry with me everywhere I go for the next 72 hours, that states I have been injected with a nuclear grade radioactive medical agent.

I asked him if I was going to get super powers, but alas that is not a known side effect.

Darn and I really wanted to become “Super Leukemia Fighter”!

I then was put into a waiting area where I had a half hour while I downed the drink for the CT Scan, (so much better than Barium is that is for sure), and I got that CT Scan a half hour later, with all of that familiar dye that makes you so warm all over.

Then they had me sit for a half hour for observation then I was sent on my way.

I don’t know if it was all of the testing I have had to do recently these last few days or if it was the super juice that was put into me but I sure felt tired after this.

But I made it home where I promptly fell asleep on the couch for a nice nap!  

Now I am just waiting for a word from the clinical trial coordinator for word when the next step comes, which if all of our ducks are in a row will be early the week of the 12th

Monday, November 5, 2012

12. What a fun action packed day I had today

BOY HOWDY!!

What a fun action packed day I had today.

It started fighting traffic for nearly 2 hours on a 35.2 mile one way trip in bumper to bumper traffic, (that would normally take about 45 minutes to an hour to do), to get the Fred Hutchinson Cancer Center in Seattle where I will be getting the clinical trial at.

Then I had to wait for a little over a ½ hour to get my blood drawn as the lab wa
s really backed up this morning.
And they took no less than 12 vials of blood for the trial. I guess they are gonna test for every known blood test conceivable to man on this trial!


After that we had a 4 hour wait for my next scheduled test, so my wife and I got to run downtown and have some breakfast as I was starving because this had to be a fasting blood test. And then we goofed around for a bit.
Then she had to drag me back to the cancer center for my (drum roll please), “BONE MARROW BIOPSY”!
Let me tell you the nurse who did this one was the absolute best! The shot to numb the bone hurt worse than the procedure itself. Oh, I did feel it let me tell you that, but I have had dental work that hurt a heck of lot more before.  And I had quite an audience for the procedure. The trial coordinator herself and her assistant had to witness the procedure (just to make sure it was me), and get a vial of the juice out of my bone marrow to send directly to the company who is footing the bill for the trial. 
Now my poor tushie hurts!
Then I had to get a EKG, then a doctor visit followed by another visit by the trial coordinator. 
So 8 hours after I got to the cancer center we got to go home!

Now I get to go back Wednesday morning for the MUGA test, and 4 hours after that I get a CT Scan.
But one good thing on my blood work is my platelets are now at 68! And the kidney function is now within normal range, so drowning myself in water for a week and cutting my caffeine in half really worked on that. Now I get to go back Wednesday morning for the MUGA test, and 4 hours after that I get a CT Scan.
As this comming Monday the 12th is a holiday, it looks like the trial will start shortly after that pending all of the tests.

Never Ever Give Up!