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!

Monday, October 29, 2012

11. Oct 29, 2012 update!


I had my appointment  with the specialist in charge of the ABT-199 clinical trial at the Fred Hutchinson Cancer Center in Seattle today.  Which entailed having blood/lab work done.

My platelets are now within the minimum needs of the trial, barley. My white blood count is on the rise again, but still in the normal range.  And for the first time in a long time my red blood count is normal!

The doctor and trial coordinator had some concerns with my kidney functions that showed up on the lab report and  think this may be connected with my having so many CT Scans in such a short time over this last year.  So the trial coordinator is letting me get by with a MRI instead.  Then comes a bone marrow biopsy and the trial will start shortly afterwards.   So it looks like were getting closer to an actual start date.

The doc wants me to start drinking mass water and to cut down on the caffeine!  Now what am I gonna do to stay awake?  Lucky for me they said to cut down on caffeine, not stop it completely!

The trial coordinator told me that after the MRI and bone marrow biopsies are done, the first day of the trial will actually consist of more tests, which will be several EKG exams, and stress tests.
 
Then the next day I will come back for a blood test, and be given the first pill.  This will be followed by several other blood tests a hour or two apart to monitor how I am doing on the pill as they expect results that quickly!  After about an 8 hour day I will be sent to the hospital for an overnight stay for even more monitoring.

All of the monitoring is because they expect what is called tumor lysis to occur, which is a massive tumor drop in the blood and bone marrow, and if not dealt with properly it could affect my organs and my body could shut down.  So a lot of precautions are taken.

The next day will be full of more blood tests to monitor whats going on again.

Then I will need to come back each day after that for more tests for 3 to 5 days.

7 days after the first pill is given, I will get another pill, which will become a daily pill from then on.  I will need to come in twice a week for 1 - 3 months, which will gradually become once a week then once ever two weeks to once a month after that.

If everything goes as planned I will be on this pill for the rest of my life.

I have actually been in contact with a person on the trial that has been doing this for several months and she is doing great.  So far with the people on this, great things are happening and everyone involved is hopeful.

This is not a cure, but so far this is the next best thing to one that anyone has found.

Only time will tell, and the good Lord willing, I will be around to tell this tale to my great grand children some day!

So it looks like I will soon be a Lab Rat! 


Never Ever Give Up

10. The passing of a friend

Last Friday the 26th I got the news that a old friend of mine had passed away from complications with Leukemia

Mike Holtum died on Thursday October 25th with his wife, and sister by his side.

The strange part is I never even knew he had Leukemia.  I guess he wanted to keep it quiet, which some people with cancer want to do.

He had what is called ALL or Acute Lymphoblastic Leukemia which attacks the blood, bone marrow, and lymph node system different than the CLL Leukemia I have.

Mike leaves behind his wife Tracey, his children, grand children, brothers and sisters, nieces and nephews, aunts and uncles, cousins and his mother. 

Curse this beast!!!

Never Ever Give Up! 





Wednesday, October 24, 2012

9. Why do some people call Leukemia the good cancer?


Well my friends, it has now been a few months since my last chemo treatment.  If you remember, my oncologist told me that tests showed that the last 6 months of chemo (which ended last July 2012) only got about 40% of the disease.  And all those familiar feeling/symptoms are coming back. 
Night Sweats
More fatigue then normal
Pain on my left side from the swollen spleen
Lymph nodes starting to swell and grow and pop out on my neck, jaw and other places on my body
Rashes
Nausea
Intestinal issues
And other assorted aches and pains

So if you ask me this clinical trial cannot start soon enough in my book!
All this and to think that some professional people, doctors included, and others call this the good cancer!  I have had a few medical professionals and people I know tell me this to my face.  “At least its only Leukemia and not some other life threatening disease!”

Please know I don't mean to sound bitter about this.  The rest of this post may sound like I am, but believe me, I am not.  Not anymore anyway!  I have learned how to deal with my cancer, and I have learned to accept what this cancer has and will thrown at me. 

I have borrowed this next part of this post from another site I have read.  I have changed it a little to make it more fit what I went thru in my own experience:
Imagine that you or another family member, or your child is sick. You go to the doctor and he doesn't know what to think, so he runs some blood work. Suddenly, chaos ensues. You and you’re sent directly to the nearest blood specialist where more tests are run. There's a sense of urgency in every one's voice, but when you beg for an explanation you are told to wait for the doctor, wait for the test results, wait, wait, wait.

Finally a doctor comes in, sits down and tells you that its Leukemia and its aggressive.  And we need to start chemotherapy as soon as possible. He walks out the door to make arrangements and there you sit. Shell-shocked.
You go home in a daze!  Thinking what the hell just happened?  After you gather your thoughts for a minute you call your best friend. Your spouse, your children, your parents!  Surely they can make sense of this, surely they can make everything ok. With tears running down your cheeks you fill them in on the last few hours of hell that you have endured and then you pause to give them a chance to fix it, to say something... and they say, "Well, at least it's just Leukemia. That's the good cancer."

The good cancer?!!?? 
The good cancer... the cancer that wreaks havoc on your body and makes you sicker and sicker until someone figures out what is going on... and then you start chemotherapy which might make your hair fall out, makes you throw up, makes you have diarrhea so bad you can barely sit down.  You can barely sleep, you can barely stay awake.  Treatments that can cause long term problems with your bone marrow, your heart, your hearing, your eye sight, your brain, your kidneys, your liver, and several other organs in your body.

The good cancer. Ask a mother or father whose child has Leukemia just how "good" Leukemia is.
The good cancer. Ask a wife or husband whose spouse has Leukemia just how "good" Leukemia is.

The good cancer. Ask a someone whose parent has Leukemia just how "good" Leukemia is.
The good cancer. Ask a someone  whose brother or sister has Leukemia just how "good" Leukemia is.

The good cancer. Ask a leukemia Patient whose friends quit coming around or call you because they don’t want to see you sick or hear about your disease any more just how "good" Leukemia is.
The good cancer.  Ask a Leukemia Patient who has to have constant blood draws and tests done.  Who has to go thru countless CT Scans, CAT Scans, MRI Scans, countless bone marrow biopsy’s done,  just how “good” Leukemia is.

The good cancer.  Ask a Leukemia Patient receiving chemotherapy just how “good” Leukemia is.
The good cancer.  Ask a Leukemia Patient receiving bone marrow or stem cell transplant just how “good” Leukemia is.

The good cancer.  Did you know that having Leukemia robs many patients of their normal life style?  No more jogging, no more bike riding, no more going to the ball game, no more going out to dinner, no more social nights with the friends, no more hiking in the woods, no more fishing, no more hunting, no more doing your regular job anymore.  No more seeing your children or grandchildren because your immune system is shot and you can’t be around little ones  when they have the sniffles!

The good cancer. The cancer that causes you to loose your life savings and wrack up all of your credit cards to pay for your medical bills and medications!

The good cancer.  The cancer that causes many who have Leukemia to go bankrupt because they can no longer afford to pay their bills any longer.

The good cancer.  Did you know that Leukemia is one of the biggest killers of people, usually children, who have cancer?

The good cancer.  Did you know that some people who get Leukemia will not live more than 3 to 5 years once they are diagnosed?

The good cancer indeed! 

Tell me again why do some people call this the good cancer?


Friday, October 19, 2012

8. A little humor to share!

I wonder if this is going to be the size of the pill on my clinical trial?

 
This is a good one for those that have been there!
 

Wednesday, October 17, 2012

7. On To Bigger And Better Things


The wait for meeting with the Leukemia Specialist seemed to drag on and on.  Then finally the day, October 8th 2012, one day shy of my 3rd anniversary of fighting this disease, came.  My wife and I went to meet with the specialist with hope, anticipation, fear, and a little bit of worry all rolled together. 
Remember, the last time I met with a specialist I walked away almost wanting to puke my guts out because of what he said to me and my wife.

The meeting started with a friendly young lady entering the exam room, she introduced herself to us as the doctors physician assistant and was here to do a pre-exam before the doctor that I was to meet with came in.
She was very knowledgeable about CLL/SLL, and it seemed to me right away that she knew more about the disease I had than my regular oncologist knew, and this young woman couldn't have been much older than one of my own daughters.    She had my very thick file in her hand and easily answered every question I had for her.  Then she brought up the subject about “Clinical Trials”

If I did not mention this earlier, the specialist I was going to see was one of the main driving forces at the Fred Hutchinson for Leukemia and Lymphoma Clinical Trials. 

I then asked her if we were going to see the doctor I was here to see, wondering if this was going to be it.  Yes she said, he should be right in, she then excused herself and soon the doctor I had been waiting to see arrived with the assistant in tow. 
He introduced himself to us, and after a little small talk, we could both tell he was nothing like the other specialist we saw before that was so cold he could make ice freeze.  (Like the pun?)

He then told us that the young lady we talked to earlier was actually in her residency at the Hutch and was one of his top students at the University of Washington where he is a professor at and teaches oncology students about Leukemia and Lymphoma.  Turns out that every year he gets to hand pick one of the graduating students from the U. W. to be an assistant of his and learn to become a specialist just as he is. 
He had my file in his hands, and basically knew everything about my progression with CLL/SLL and knew of all of the treatments I have endured.  He then let her continue talking to me about the trial they were interested in my going on. 

The trial is a cell inhibitor which is a drug in a pill form that will basically search out, target, and kill the CLL/SLL cells in my body.  It is what they call an cell inhibitor that prevents the cell from getting protein and killing it. 

This trial is still pretty new, and has been going on for a little over a year nationwide.  The trial will have 70 total people in it, and so far they had only about 10 more openings.  To get into this trial you had to have failed at least two conventional types  of treatments, and have certain genetic markers, deletions, blood work numbers, and be in a fairly good state of health to withstand the rigors of the trial.  All of which I meet.  And so far the trial is showing very good results and is actually doing good things for people who have a much worse prognosis than I do with CLL/SLL!

He then took over the conversation with more details of what I will need to do, etc. etc.  And told me that in his opinion this new drug was like it was tailor made for someone like myself.  He talked to us with compassion, wit, personality, confidence and poise.  Something that the first specialist sure lacked. 

My wife then told him about our encounter with the other specialist, (calling him by name), and his response was well I aint him am I!

It was very refreshing to actually talk leukemia with this doctor.  He seemed to like the fact that I was at least semi educated about Leukemia.  He knew or knew of every specialist that is big in this field and was pleased that I knew of these people also.  At the end of the meeting he excused himself and left his assistant with us to finish up some paper work on the trial.  My wife told his assistant how good she felt about us working with them now.  And that she and I appreciated their professionalism and manner.    The assistant told us that the doctor was one of the best doctors around and that he has had offers to practice all over the country, but he continues to practice at the Hutch because that is where his wants to be.

Our next meeting with the specialist will be on October 29th 2012 to have some more blood work done and schedule what goes on next,  which will be a bone marrow biopsy to look into my bone marrow to see where the disease is at and how healthy my bone marrow is after all of the chemo.  And to review the beginning of the trial itself.

So in closing here today we are now waiting for more details, which I will have soon.

Never Ever Give Up!

6. Results from my 3rd line of treatments


About a week after getting out of the hospital, I went back for more tests, this included more CT Scans to look inside at the lymph system, and lots of blood work.  Then back to the oncologist for the results.
He sat down with my wife and I and went over where we’ve been, and what we’ve done.   Then got into reading about the scans.

As it turns out I only got a 40% reduction in the cancer after going thru 6 months of this last treatment. 
BOOGERS I THOUGHT TO MYSELF!  WHAT NOW!

The oncologist, said we should take a couple of months off of treatments, and relook at our options then.  Which could be more chemo’s, which he was not too big on because of the potential damage already done to my bone marrow.   So he suggested going on Rituxan alone as a maintenance therapy, as he was now out of “FDA Approved Treatments”.

Now let me back up a little bit here.  Before I started the Treanda/Rituxan I got in contact with a doctor who also has the same disease I do.  He is a general family doctor, who officially couldn’t give me advise, but said it would be in my best interest to see a Leukemia Specialist , and recommended one he knew of at the Fred Hutchinson Cancer Center in Seattle that he had met at some Leukemia Conferences and spoke highly of this guy.  I did try to contact him for a opinion before starting the Treanda/Rituxan, however he was so booked out at that time I would have had to wait 12 weeks to see him, and the window where I could start the Treanda/Rituxan without undoing all of the maintenance chemo I had done the year before to “prime my body” would end.  So at the time I decided to go with the flow and go with my oncologist recommendations.

So here I am again, back at a crossroads, needing treatment but all of the conventional methods are now out of my reach!  Was I now at the end of my journey, as from what I knew of Stem Cell Transplants I was not going to go down that road, as doing so would mean financial ruin for me and my wife, as I would not be able to work, which means no job.  No job means no income.  No job means no health insurance.  And so on and so on.  So basically I would have to bankrupt to do this, and I was not going to do this to my wife to only get another 18 months or so, (if I survived the procedure that is).  And with a 30% chance of not surviving, and a 60% of not making it a year if I did the transplant, are not good enough odds, where I could keep going just as long with just maintenance.

Then a light bulb went off.  Why not try the specialist my doctor friend told me about?  So I called and now this time I was able to get in within a lot better time frame. 

So we met with my oncologist again, and I told him of my plans.  He was all for this.  He told me that if he could be of any help to let him know, and he then sent all my files to the specialist.

Meanwhile, during the time I was waiting to see the specialist the old familiar feelings of CLL/SLL are coming back.  Fatigue, night sweats, pains in my left side, now compounded with a rash and bone pain!  Oh well, the things we put up with!

Never Ever Give Up!

5. Third line of treatment in less than 3 years


By the time that December 2011 rolled around my oncologist started to review new treatment options with me.  We could try a few things, one of which was going back to FCR.  I thought to myself, if this did not work last time why would it work now?  So he then brought up the idea of trying Bendamustine, also known as Treanda, combined with our old friend Rituxan.
Bendamustine is an alkylating agent recently approved by the FDA for treatment of Chronic Lymphocytic Leukemia (CLL). The FDA approved bendamustine (trade name Treanda) based on a recent randomized, controlled clinical trial as treatment for CLL. 

Bendamustine is a product that came to be by an accidental discovery because of the use of nitrogen mustard gas during World War 2.  It was discovered that vets returning from war who were exposed to small amounts of mustard gas were immune to some diseases.  Thus the birth of Bendamustine.  Funny how some people figure out what to use to fight cancer isn’t it. 
The problem with Bendamustine being a alkylating agent is that is what cytoxin also is.  Remember I had cytoxin in a pill form and with FCR also, so this could be a taxing thing for my bone marrow.  But because CLL originates in the bone marrow, it’s a chance worth taking. 

The rituxan is added to go after the bulky part of the disease and also aid the Treanda in fighting the CLL.
So we started another 6 months of IV infusions with this cocktail from February 2012 thru July 2012.  This consisted of 2 days in a row, the first day is both Treanda and Rituxan together.  Then the 2nd day is a short day of Treanda alone.   And as before, each day started with the good old pre-meds of saline including Benadryl, and steroids.   This was to repeat every 28 days again for 6 months. 

The same old side effect of Rituxan hit me again, (remember the hot dog being cooked in a microwave?)  But the first few Treanda treatments went o.k. 
This chemo cocktail did not make me nauseous once, but I got some major bone pains, had some huge spans with being super light headed,  massive fatigue, and a fast heart rate.  But this time the steroids really picked my appetite up and my wife could not keep anything in the kitchen!

Rounds 1 thru 5 went as well as could be expected.  No major surprises other than what I mentioned above.  But after the last round I came down with a fever. 

Remember what happened to me ending up in the hospital with FCR? 

So this time we called in right away.  The doctor thought I might have what is called a neutropenic  fever because of a super low white blood count, as the treanda is also a indiscriminate killer of cells, both good and bad.   And the doc said to get my rear into the hospital.
So off to the E.R. again.  After about 12 hours of just about every test under the sun they determined I had tachycardia with a heart rate of 120.  The average heart beat should be between 80 – 100.  The fever had subsided, but they wouldn't let me go home until my heart rate got a lot closer to normal.  So after 3 days in the hospital, my heart rate finally got to 105, good enough to go home. 

Oh, this was all determined to a side effect of the Trenada.  Other side effects are a rash, that I am still dealing with today, about 3 months later.   And a metallic taste in my mouth, that will not let me drink anything from a can.  The things we do to stay alive.......
Never Ever Give Up...............

Tuesday, October 16, 2012

4. The End Of Remission


As my luck would have it, 8 months after the FCR chemo finished, and just about a year after my initial diagnosis of CLL I had officially relapsed.  

Crap I thought, wasn't I supposed to get 3 to 5 years?  I only got 8 months! 
Lymph nodes were starting to pop out everywhere.  It got to the point where I could have passed for a chipmunk with a cheek full of nuts.  And the lymph nodes under my arm pits made me look like I had water wings on.

CT Scans and blood work became the new normal once again and I had lymph nodes growing inside that were huge.  I even had to go in and have one lymph node removed from under my left arm so they could dissect it and do a biopsy of it to determine what is going on with me.
My Oncologist soon affectionately started to call me his problem child!  And he wanted me to see a specialist, so December 2010 saw my wife and I going to see one that was arbitrarily assigned to us in Seattle.

Now I don’t want to get into being a downer here, but this “so called specialist” was nothing but a first class jerk, no emotions, no bed side manner, no personality!  And he told me my only hope was a stem cell transplant and if I did not have one he would be surprised if I lived another 18 months.  But the picture he painted for me having one scared the holy crap out of us!  One being that I would have a 30% chance of not living thru the procedure, then a 60% chance of not living more than 3 years or more.  And with his attitude we promptly fired him and went back to my regular oncologist for help.
My oncologist sure did not agree with what the specialist told us.  And sought counsel with his peers at the clinic, plus wanted to do more research on what to do next. 

January 2011 my Oncology doctor had me start an oral chemo maintenance program.  This was only to keep me on a even keel so to speak, with another treatment to come later.  But he did not want to whack on me too hard so soon after finishing FCR chemo. 

The maintenance consisted of 14 days in a row of taking chemo pills called cytoxin along with a steroid called prednisone for the first 7 days of taking pills.  This went on thru all of 2011, three months on, one month off, and so on for a full 9 months total of maintenance chemo pills.

Never Ever Give Up!


3. The Woes Of Chemo



Each day of chemo starts with getting an I. V. stuck into a vein your fore arm.  Ouch!   Then blood work is done to determine how my blood was doing and to see if I was healthy enough to get chemo.  Then you get assigned a chair in a room where the chemo is administered.  It all starts with pre-medications mixed into a saline solution consisting some pain killers, Benadryl, and steroids.   All done by a I. V. infusions.

The problem here is that you get the I. V. taped to your arm for many, many hours.  Some days could be as much as 6 to 8 hours, or longer depending on how your body reacts to the drug.  And after the first day of this, I learned that shaving your arm will save you some unnecessary pain when they take the IV out.

The first 3 days of treatment went as well as could be.  Except for my encounter with Rituxan which I already mentioned.  But about 3 days afterwards I really learned what the word nausea means!  For about 5 days I could barely keep anything down, and felt like crap for about 10 days.  I was warned that this could happen, and one of the cancer nurses suggested I try acupuncture to help keep the nausea at bay if it did happen.

The after chemo glow is a nightmare, your exhausted, but you cant sleep.  Your not hungry but you force yourself to eat, but you usually throw it back up.  Its kind of like the worst flu you can imagine multiplied times 1 million!  Then the steroids kick in and you eat everything in the kitchen, but like I said, sometimes Mr. Nausea kicks in and gets rid it for you.

As luck would have it I couldn’t get into see an acupuncturist before my next 3 day round of chemo, but  I did get in after it was over.  But after a few days after I had my 2nd round of infusions I got very sick, very fast.  In fact on my 2nd visit to the acupuncturist,  when I stood up to go in for treatment I passed out.  All I know is everything just went black.

My wife took me to see my general doctor as he wasn’t too far from the acupuncturists office.  One look at me and he called an ambulance.

An ambulance ride later I found myself in the Emergency room!  And was entered into the ICU. Turns out I came down with sepsis and it turned into pneumonia!   I spent 3 days in the ICU unit and 11 days total in the hospital.  I was told that when I entered the hospital I was near death.  Needless to say, I learned to notice the warning signs of this very soon. 

When I was finally sent home I had to be in isolation at home.  No getting out of the house except for doctor’s visits or chemo.

What was supposed to be my 3rd chemo treatment was cut short as the Oncology doctor wanted to take it easy on me as the FC in FCR is what makes you sick as it is what hits you the hardest.  So I had Rituxan only and was told to skip the FC for that round!

Before the next round of FCR chemo I got to have acupuncture a day before chemo started.  I got the full 3 day treatment again, and it worked, I did not get nauseous or sick from the chemo after that. 

4 weeks later I got round 5 of my 3 days of FCR chemo.  No illness thanks to acupuncture and no surprises.

On what should have been my 6th and final round of FCR chemo my Oncology Doctor told me that the blood work came out so well that no more chemo was needed.  And was soon told I was in remission.  Yaaaaa!

Slowly life got back to normal.  And I was soon back to almost a normal life.  I had regular check ups every month, but about 6 months later the blood work started to get worse, then about 8 months later I noticed all of the same familiar pains and symptoms coming back.   More on this later.....

Never Ever Give Up!

2. The Start Of Chemo


The tests that preceded the treatments to determine the extent of the CLL I have, showed that I had significant lymph node growth and a swollen spleen.  That explained the pain I had in my left side.   My white blood count was well over 300,000 where the average person has a WBC of between 4,000 and 11,000.  Plus other tests to show it was indeed CLL/SLL.

By the way, SLL is short for for Small Lymphatic Lymphoma.  And it and CLL are almost the same disease, but just a little different.  Lucky me, I have both!

The treatment I was put into consisted of a chemotherapy cocktail of Fludarabine, Cyclophosphamide and Rituximab or better known in the world of CLL/SLL as FCR.  Which is currently the standard of care.

The Rituximab, or Rituxan is a special drug.  The first day of it was the worst.  I had a little reaction to it, and well, I now know what a hot dog feels like when its cooked in a microwave.  But each following Rituxan treatment was tolerated a lot better.   The Rituxan is mostly there to treat the lymph nodes or as the doctor called it the bulky part of the disease.  It also helps the Fludarabine and Cycloposphamide which are the actual chemo parts that attack and kills cells in your blood and bone marrow.  It is a indiscriminate killer, and also attacks healthy cells as well as cancer cells.

By the way, an interesting fact of Rituxan is that it is made by fusing parts of a mouse DNA antibody with part of human DNA antibody and is grown in the ovary cells of Chinese hamsters.  Thus the reason many Rituxan veterans call it "Mouse Juice"!

For those of you who have not had chemo before, it’s all done via a I. V. that a cancer nurse pokes into your hand or arm.  Or some people get what is called a port, that will allow for the chemo drugs to be pumped into them without a I. V.

My cancer nurses soon earned a nick name of cancer angels.  These are a very well trained, caring and loyal people.  My wife, who is also my caregiver and my rock, made sure to bring a special treat to them and the staff of the chemo ward on the first day of each round of chemo I underwent.

I started this chemo in October 2009 and finished it in February 2010.  I was announced to be in remission in March 2010.  More on chemo woes later.

Never Ever Give Up!