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Posts Tagged ‘clinical trials’


The elephant in the room.

May 17, 2015

Let me just address the elephant in the room.  The result of my scan was not good.  My current clinical trial, from the looks of it, is not working according to my doctor.  He called as we were on our way home from the hospital.  The results came fast since I was the first patient scheduled for CT scan that Friday morning, so the radiologist got to it right away.

“Hi,Mr. Alvarez, Dr. S. here” said the familiar voice.  Dr. S and I are getting to know each other well.  He normally talks fast and is always smiling, but inspite of the friendly greeting his tone this time betrays him.

I stopped the car, parked, and put my cellphone on speaker so my wife could hear.

“The scan results showed some growth in your lung nodules…”  I stopped listening and just looked ahead.  It was not the news I wanted to hear.  Another bad news given.  I thought I was ready for this but no matter how many times  I get them, it still gets to me: Shock and disappointment.

My thoughts came back because there will be changes again, that is if I want to.  It always boils down to what I want.  The funny thing is you think you are in control but in reality you are not.  I want no more chemo but I still have to go for treatment (only if I want to).  Duh?

Dr. S gave me more details and told me about my options.  Options? What options?  It is more like pre-destined—and forced—options because they were not what I want.  Do they have something more pleasing like a Chinese buffet menu?  I digress, but today’s menu is:

  • stay on for more treatment with the current clinical trial to see if I respond or
  • move to another clinical trial.

You like, no like?  (In Chinese tone).

But this is serious real-life (and death) decision.  This is not even worthy of a FB post needing like/unlike response because there is nothing to like in the choices in front of me.  This is serious sh*t.

So now I am back to square one again.  Stay on and hope I respond, or move on and hope the next one works.  Two options both based on hope which, of late, is a very precious commodity.  Hope is the one element that has been fueling me all these years and lately I am running on fumes.  It is a wish, a thought, or a plead for something better.  Is that too much to ask?

Perhaps I should just ask for something simpler or maybe not ask at all.  Just do the gerbil run-to-no-where and enjoy the ride.

Cheers.

P.S.  On Wednesday I meet with my doctor to discuss other clinical trials and decide.

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It is official:  I am out.

March 1, 2015

I

I am officially out of my current clinical trial because they have determined I am (again) no longer responding to the treatment.  I have exceeded the growth threshold.

Now, we look for another one that I can enter.  Needless to say this journey is just frustrating.  I have traveled far and long with this cancer.  I have had victories and defeats, lately, it is more of the later.

I will meet with my doctors again this week to discuss my other clinical trial option.  We have stopped my treatments and will not expect to have one in the next four weeks.  This is to wash out the trial drug in my system before entering a new trial.

I should be rejoicing, especially since they are stopping my chemo.  You have heard me say before: I hate chemo.  Now it stopped it feels weird, awkward, like a break-up.  What do you say after?  It is as if somebody took my security blanket.  I am lost.  I am hanging untethered for the next four weeks. Hopefully, I find the answer in Jerusalem and Rome, if not peace.

Cheers.

 

 

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The human experiment: My first day at clinical trial
August 1, 2014.

This is a recount of my first day at clinical trials

Monday, July 28, 2014

H“Hi, Mr. Alvarez.  My name is Sammy and I will be your clinical nurse for the research.”  Reality hit me that I am now going to start a new phase in finding a cure for my cancer. My mind was pre-occupied by the events leading to this moment.

Earlier that day.  The clock reads 4:30 am and I am awake.  I need to get to the hospital before 7:00 am and it is a 20-mile drive from my house.  It is normally an easy drive but you have to pass through downtown to get from the north side, where I live, to the south side of Chicago.  I use to have a habit of going to the gym first before going for my chemo sessions but I don’t have time.

After a quick shower and breakfast, my wife and I leave for UofC Medicine.  We get there early but there are already other patients in the waiting area.  They look at ease with their surroundings, while I take in all the new environment.  Some patients in the waiting area are wearing protective masks, others are pale, glassy-eyed, no hair, and just look unhealthy.  I know that look.  Each of us have their own state of mortal temporariness; each, also, prefer not to be in this situation.

“So, Mr. Alvarez, today you will be having this new treatment.”  Sammy started to explain.  I was given a room with a bed after checked my vital signs and weight.  The staff is very efficient and courteous, like Sammy.  I learned later he is from Ghana and has been with the hospital for 16 years.  I am in safe hands.

“During the treatment you will be closely monitored.  There will be several EKG and blood tests before, during, and after your infusion.  The infusion will normally take two hours but you will be ask to stay longer so we can take more blood test and monitor you.  Is this your first time to undergo a trial?”

“Yes.”  I replied with a little anxiety in my voice.

This is a new experience for me: a human guinea pig.  I am participant Number 5.  Previous to this, the drug was only tested in mice and monkeys.  I suppose there is always the first time for anybody and it is too late to back out now.

Assisting Sammy is Saray, a sweet and motherly clinical technician, who tells me her son’s birthday is exactly like mine.  She has contagious smile.  She started with the EKG (the first of several) test, then proceeded to insert an IV line in my arm to get all the blood they would need during the treatment.  My port, located in my chest, was also accessed and with that we were ready.

Sammy started me off with three-drug “happy cocktail” combination, which is familiar to me.  The cocktail includes: Benadryl to put me to sleep, steroids to prevent any allergic reaction, and Pepcid to settle my stomach or more like to prevent vomiting.  I felt the effect of Benadryl lulling me to sleep but I held off to experience the first few drops of the trial drug.

As I took in the drug my senses were primed to any allergic reaction from the drug.  My wife holding my hands, looked for any changes in me like rash or discomfort.  My vital signs stayed normal as the minutes ticked by and finally I was out.  I was aware of my surrounding but too groggy to wake up.  After two hours, the infusion was done a post infusion EKG test was done, then more vital sign checks and blood tests.

They got so much blood from me that you would think Dracula is just outside my room sipping blood mimosa.  Well the idea is to monitor the chemo toxicity in my body to determine the safe and effective level to administer the new drug.  It was a long day at the hospital due to all the blood test requirements but I was glad it all went well.  I was given instructions to report any changes or side-effects I experience from the drug.  If any severe reaction happens, call 911.  Whatever.

For the next cycle, I am sure the dosage will be increased to see how I respond.  Maybe next time I will come in as a mice or in a monkey suit with a number 5.  Ha!

Zzzzz.... knocked out during the treatment

Zzzzz…. knocked out during the treatment

Cheers.

P.S.  I recovered from the first chemo cycle with only hiccups as a side-effect.  I started my own experiment too to see if I can train for a marathon while doing the trial.  Goal this weekend, another 10 miles.

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Clinical Trials:  I am in.
July 25, 2014

II am number 5.  That number looks like the number of an elite marathoner, but it is not.  It just means I am the 5th participant to this new anti-cancer drug.  Yes, I am in … for real.  I count myself among the select few to undergo this human trial, and I start Monday, July 28 at the University of Chicago Medicine.

The objective is to determine the safe and effective level for this new Phase 1 anti-cancer drug that address the RNA part of cell molecular structure. Don’t ask me explain, it is complicated.  All know is, it was first tested in mice and monkeys with positive results and now they are trying it on humans.  Guess what: I am the 5th “sucker.”  Ha!  I love it.

This trial is different from the one that was offered to me in April (see A Different World: Part 1 and Part 2), wherein I did not even get to start because of my platelet problems.  However, from what I am told this new trial is a better fit for my profile and that they are getting positive responses from the other trial participants.  That’s good to know.  Frankly, my options are not exactly a lot: either I do trial for a chance of another tomorrow or just give up.  I have tried all the other traditional chemo regiments and I am now immune to them.  I am willing to participate in this trial just to conquer my cancer.

Last Wednesday, I did all the pre-trial test such as: blood test, EKG, PET scan and CT scan.  With my platelet up (thanks to MD Anderson) and other blood work looking good, they allowed me to start Monday.  My start date would have been end of August, but the drug sponsor liked the initial results and decided to accept more participants.  It will also be chemo infusion and would require me to stay long at the hospital.

Well I am ready.  Since coming back from MD Anderson, I have been working out, running, and keeping active.  This cancer has brought me all over and tested me at every turn.  Cancer is my reality; the life I live through everyday is the dream.  I have so many wishes but I temper my expectation to what I can achieve or get.  That’s why it is better to live your life one day at a time.

Monday is marathon day for me.  My bib say number 5.  I know there could be problems ahead, right now all I want is to finish..in one piece.

Start

Cheers.

P.S.  My miles are slowly building up again.  Tomorrow let see if I can do 10 miles.

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Life as a super hero.
May 10 2014

My career as a super-hero ended in a flash.  I had donned my mask for fear of being identified, tied my newly dry-cleaned cape for effect, and held my shining armor as the accessory to compliment my outfit.  Then, walked into the room.  I am Super Bo.  I sow fear in the heart of the Karkanikos (cancer), the evil enemy of the world.

I waited for the emissary of Karkinikos in this small holding cell looks like a medical office.  The mystery of Karkinikos is still to be revealed.  Nobody has seen him but he kills with deadly stealth.  But, I am here now.  I have come this far and this thing will now and here!  With a chest-thumping move, I curse you to hell, Karkinikos.

Roar

The room they are holding me was sterile clean.  It has monitors and air valves in the wall that I think will be used to torture me into submission.  I wish my super-partner was not with me to witness the mess I am going to do with Karkinos’s emissary after I am through with them.  There in the middle of the room is a medieval padded table made to look like an examination table.  Ha!  They will not be able to hold me in this room much less examine the source of my powers.  I am Super Bo.

My resolve is strong!

Then she enters, not intimidated, wearing a seemingly innocent lab coat designed to throw me off.  She stares back at me with a menacing stethoscope drape across her neck like a whip ready to unleash her wrath at me.

“Mr. Alvarez, my name is Dr. G, a fellow at the hospital, and I work with Dr. S., the principal researcher of your clinical study.  We got the results of your blood test.  Your platelet count did not significantly go up and you did not meet the criteria for the trial.”

 

Kapow

I pass out….

Oh…oh.  What happened, Super Bo?

And that was how my career as a super hero and lab rat was ended.  My mission was suppose to save other people with cancer by undergoing clinical trials.  I was going to make the ultimate sacrifice for the good of mankind, but I was robbed of the opportunity.  We were talking medical history, Pulitzer, book tour…Oprah.  All gone.  Kaput.

My platelet count did not get a boost from the big dose of steroids I had.  It did not work.  It may also mean that there might be other underlying cause.

The clinical trials require I have a blood platelet count of at least 1ooK.  It is for safety and buffer reason.  After the boost, I currently at 60K level.  If we started my chemo trials at my current platelet level and I start to loose platelets, I will have little buffer of safety.  At 30K and below, I will be prone to bleeding and bruises.

Time to lace up the running shoes, re-group, and map out the next step.

Cheers.

 

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A different world: Part 2 of 2
May 5, 2014

The easy part was signing the document.  I did not realize that to get the trial started was the harder part.  To get started I have to do a blood test and EKG.  Sounds, easy.  I thought so until they saw my low blood platelet count and slight EKG irregularity.

I had my blood test another blood test and EKG done last Friday, and the results were the same: Platelet is 60K (normal is above 130) and the EKG, still slightly elevated.  My blood platelet problems has been an ongoing thing since last year but we did not address it due to other concerns during my treatment.  Beside I was asymtomatic, meaning I showed no signs of bleeding, nose bleeds or noticeable bruisings.  I should have recovered by now being off chemo since end of February, physically active and  practically a vegetarian now.

At the moment, I cannot do anything about my EKG for the meantime but I am currently taking high dose steroids to correct my low blood platelet count caused by ITP.  I should be done with it by tomorrow, then another blood test to verify results, and a discussion with my clinical trial doctors on Wednesday (May 7).

Needless to say, I am disappointed.  Call it clinically interrupted.

My choices are limited and I can only control so much of what is happening around me.  I should have started the chemo trials today, instead I have to wait for the verdict.  I can understand clinical trials are different, it is after all a controlled study where everything has to be the same.  However, this can be mutually beneficial if they see it that way.  To them it is a study, to me it can be a life changing event.

Oh well, why bother.  I am not going let a beautiful 55F (12C) day go to waste by worrying.  Instead, my wife and I just turned it around and completed 7 miles at the lakefront.  Bam!  A no chemo day turned beautiful.  How was your day?

Its-A-Beautiful-Day

Cheers.

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A different world: Part 1 of 2
April 29, 2014

DDr. R is a different doctor from my oncologist, Dr. M.  For one, the former is a more of a researcher and the latter a clinician.  I am entering a different world this time– new surroundings, new people, new hospital, and new treatment.

The difference with my former hospital is noticeable.  My “old hospital” is relatively small and I am very much familiar with it.  When I walk in the cancer center, I see the familiar sights of nurses and patients who are all hooked up to their chemo infusion pumps.  It has been my “home” for the past six years.  I practically know all the nurses there, and they know me.  I have my favorite chair which allows me a good view to the healing garden of the hospital.  I have spent many hours here; met new friends, and have said goodbyes to those taken by cancer.  The familiarity of the surroundings evoke many memories, including the sterile smell of chemo.

I am about to turn a new page.  I got in to a clinical trial at University of Chicago (UofC), which will be my “new home”.  It is different from my old hospital; much bigger and further from my house (15 miles vs. 1.5 miles).  The staff, specially the nurses, are highly trained with lots of acronyms following their names (and they even have business cards to give.  Impressive.).  At Uof C, before Dr. R sees me, a Fellow (board certified doctor in specialty rotation) sees me first, then the doctor.  At my old hospital, a medical student/s checks me first then my oncologist, Dr. M.  I can get use to this.

I go to a cancer specialty area too: the research center.  You might say that the research center is the last stop for those fighting cancer, it is the “outlier” practice.  Anything goes here.  The people I see at the waiting room are different too; some are very sick while some looking normal.  They come from distant places too and the presence of their families accompanying patients are noticeable.  I am among them now; people who have exhausted their options.  We are human guinea pigs or lab rats or those who can offer hope to others.

 

“Thanks for coming at quick notice.” Dr. R said upon seeing me.

They called during my lunch break and was asked to come in two hours.  Also, this is my third time to meet him for a consult.  He and I still needs to warm up to each other.

“A new phase 1 clinical trial just opened up and I think it fits you.  It is an immuno-therapy treatment for drug x (not sure if I can divulge the name, but it is also a tongue-twister), combined with an FDA approved drug for colorectal cancer.”

We are bonding now, doc.

Without stopping he tells me the details for the drug and the objective of the trial: to determine the effective toxicity level or safe level of the drug.

“You must decide now if you want to enter the program”  Gulp.

To be continued…

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