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Clinical Trials: I am in.


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.

Platelets are up


375Platelets are up.

July 1, 2014

Yes!  It is now 375!  Unbelievable.  It use to be 60 or 70, now it is three times higher.  To qualify for clinical trials, it needs to be 100.  I think I have plenty to spare.  Woohoo.

Games of Tumors


Games of Tumors
June 28, 2014.

II still hurt from the spleenic embolization I had last Thursday, June 19.  Spleenic embolization is a non-invasive procedure that is used to disable part of the spleen, where blood platelets are stored.  Think of the spleen as the gas tank for platelets, only mine has grown slightly in size due to long periods of chemo.

To objective is to resize my spleen to make it store less platelet and boost the count.  Humans can exist without spleen you just have to watch your diet.  The conventional approach is open you up for surgery or use embolization technique.  The is latter is non-invasive–and better–because the procedure calls for inserting a catheter in an artery in your groin.  From there, using a dye to map your arteries they navigate the catheter until they reach the spleen.  (Note: This is my second embolization, the first was in 2009 when my cancer mets to my liver.  See post, At the starting line with Dr. B, December 22,2009).

Upon reaching the spleen, certain arteries that deliver blood to the spleen are blocked thereby effectively disabling that area.  The result is a reduction in the effectivity of the spleen to store platelets.  Since mine was already enlarged 60%-70% of my spleen capacity was reduced.

Being non-invasive does not mean it is not painful afterwards.  During the procedure they are awake because they need you to move to certain position to put the catheter in the right place.  Don’t worry it is just a blur.

The after care is the challenging part.  It is deciding how much “care” and recovery you need.  The doctors have warned me about pain from the spleen and a referred pain to the left back shoulder for the next two to three weeks.

While at the hospital, you are practically drugged to your senses.  I was given my favorite “toy” again, a contraption that continuously deliver morphine and as bonus after a prescribed time, you press this red button and more morphine comes out.  Whoosh.  Watch out morphine rush.  Then to help you sleep more drugs and narcotics.  The danger is you become lethargic and constipated.  Reality.

Reality is also traveling back to Chicago from Houston drugged out and in pain.  I have flown many many miles for business and in certain conditions, but none has prepared me for the travel back home.  I was in distressed.  The high narcotic dose makes me vomit and nauseous.  Like many travel nowadays in the US, it is full and delayed.  It was not our  lucky travel day, our flight was delayed then we were put on a late flight in a different airport (HOU airport to IAH airport, which is 35 miles north).  My wife took all the burden of travel since I could not even lift anything.  I love her.

Back at home and after a week, I am slowly recovering.  I still take narcotic pain meds like candies but I found the balance of when to take it and not be constipated.  Next step is a blood test if my platelet count responded.

The never ending bloody saga “Games of Tumor!” continues.  For this battle, Lord Spleen gave the ultimate sacrifice for our kingdom but he is still with us.  FREEDOM! (ala Mel Gibson in Braveheart)

Cheers.

P.S Doctor’s checkup this week for platelets.  Many  thanks my friend Ria for letting us use their house while she and her family were on vacation. Go USA in the World Cup

My Father’s Day


My Father’s Day
June 6, 2014

This is one holiday that I look forward to after Mother’s Day.  With all attention towards Mother’s Day, it is time that we Fathers take the stage.  Ha!  After all we are not only bread winners in a family, we are also keepers of the honey-do list: Honey do this…honey do that!

In my household, I rule.  Whatever I say goes.  If I say I am going to clean the bathroom, nobody opposes.  If I say I am gong to wash the dishes, I do not hear a word from the family.  I just have a wonderful family.

For this year, we celebrated Father’s Day early, June 6.  There is a reason for it is that I will be back at MD Anderson Houston, TX on Father’s Day weekend.  I need to consult my low platelet problem and undergo an embolization of the spleen (Note:  The spleen functions as a blood filter to the body).  They noted my slightly enlarged spleen and want to address this problem.

I would rather stay home but that is not the case.  I am use to this.  We celebrated our version of Father’s Day by having a picnic at the lakefront.  It turned out good too and I definitely enjoyed.  Ethan, my grandson, enjoyed the most because he has room to run and was playing baseball with the family.  I am definitely blessed.

At MD Anderson Houston, TX
June 14, 2014

It is Father’s Day weekend and I am here at the hospital.  It is a Saturday.  It is quite at the hospital, but there is still plenty of activity on this floor.   Cancer does not wait.  I am waiting to have my CT scan done.  They will be giving me my prep drink soon and I will have to finish that before the scan.  I know the routine having done this many times.

It is my first time to have a scan here at MD.  In my quest for a cure I have been to many places too like: Mayo, Northwestern, and University of Chicago.  All of them are different but the patients who go there are the same.  It is the look in their eyes that I always notice.  These medical facilities make an effort to make things easy for the sick and desperate.  I always get a jolt of reality when I sit in waiting rooms for test or consult.

It is a totally different world here compared to the outside in the “normal” world.  I straddle both worlds and am always in conflict between the world I want and what I was given.  I just ran a half-marathon two weeks ago and now I am here at MD Anderson.  Two weeks ago I was surrounded by runners aiming for personal records (PR) and now I am with patients just aiming for a chance of more tomorrows.  It is what it is.

There are fathers here in this waiting room.  They are surrounded by their families.  I know each of us wish we were not here but we also know why we are here.  Knowing that gives me comfort, I am in good company.

Drinking my prep drink at MD Anderson

Drinking my prep drink at MD Anderson

Cheers

P.S. Looking forward to seeing my wife tomorrow to complete my Father’s Day.

Memorial Day


Memorial Day

May 26, 2014

Today is Memorial Day holiday here in the US.  It commemorates the continued sacrifice of soldiers and veterans.  My wife and I started our holiday weekend by running the Soldier Field 10 miler last Saturday (Note: Soldier Field is a football stadium and home to the Chicago Bears).
This is my second time to run this race; the first (2011) one I cheated and did not even run the whole 10 miles.  I just had my treatment that week and was in no condition to run, so I just walked the course and turned back when I got tired.  This year I made it to the starting line and completed the whole 10 miles (2:15).  I felt good after and it boosted my confidence.  It is like breaking a psychological barrier since this is my longest run for this year.  From here on, it will be double-digit miles and the training gets harder.  All for NYC marathon this November.

November is still far away but it is a goal I have set for myself.  I don’t even know if I will be at the starting line, all I know I need to do something today to to be ready for tomorrow.  They say sports, any sport, is a metaphor for life.  It reflects all the challenges you encounter in life and lets you experience the rewards of your righteous efforts.  That’s what running gives me: blissful reward for my effort.  Unfortunately, running and my cancer share the same path as well; it is part of me.  I roll with each good run or any positive news about my cancer and struggle when I have a bad run or when things are complicated.

My world is a hodgepodge miles, platelet count, pace time, blood tests, etc.  I understand all these numbers, they are my life signals.  Lately, my life signals are showing positive: My platelet count is now 70K up from 55K and my tumor count is down to 9 from a high of 11.8 a month ago.  I am breaking barriers here too.  I am happy with this fragile progress but there is still work to be done.  I have to earn each day (or mile) towards the goal of one day be cancer-free.

What’s making it work this time?  Diet, exercise, and prayers; the same formula available to everybody.  I also think the difference is how to make it work and the effort you put in it.  When it works you are given a medal as a reward and if you are lucky, it will be given by a uniformed Marine .

At Soldier Field getting our medals.

At Soldier Field getting our medals.

Cheers

P.S.  Next race is North Shore Half Marathon on June 1.

Like an unemployed bum.


Like an unemployed bum.

May 17, 2014

Life as a retired super hero is boring.  Nobody to save or rescue.  It is like being an unemployed bum just waiting for the right opportunity to come.  It has given me time to think about my low platelet count and consider my next move.

The low blood platelet count is the result of taking too many chemos over the past six years, I was told.  I have taken them in many different combination and dosage.  Also, it is  the reason why my cancer is no longer responding to traditional chemo regiments of FOLFIRI, Avastin, FOLFOX, etc.; they have become resistant to chemo.

The low platelet is a symptom of other possible problems lurking in the background.  Problems in the spleen, which is acts as a blood filter, or bone marrow  ,which produces the platelets among others.

A recent test showed it is not the spleen.  This was determined by an ultra-sound of the spleen last week.  The test showed my spleen was slightly enlarge but functioning and of no concern.  Which brings us now to my bone marrow.  Ahhh…..  I wish I don’t have to deal with this problem but it has been bothering me.  I can’t shake it off.  I am a magnet for problems when it comes to my cancer.  Each time I turn I am presented with another obstacle.  I cannot seem to outrun this thing.

Here is my dilemma: I need to cure my cancer.  I cannot go back to my old chemo regiment because it is now ineffective, so I go to my only choice of using experimental drugs.  I get accepted to a promising clinical trial program, but I fail the platelet count criteria to get started.  I isolate the probable cause of my low platelet count and it points to bone marrow problems.  I look at the associated challenges to fix my bone marrow problem and I see bone marrow transplant, donor searches, hospitalization, etc.  Argh…  WTF!

I could be overblowing this thing and I can almost hear the unison advise of taking things one-day-at-a-time.  Or have faith or be strong or whatever.  Well, I have taken those things to heart.  Everyday, I try to make the most of my day for the pass six long years.  Each day requires a lot of effort, tolerance, temperament, faith, and hope; while others take things for granted.

However, time is against me and it is such a precious commodity to waste.  I have been off chemo for a few months to heal my body but my cancer cells are still active.  It will just be a matter of time before they make their presence known.  In the meantime, I feel good and most people who see me say the same.  My miles are up, I have a 10-mile race next weekend, on track to do a half-marathon (13.1 miles) in June, and probably hit 15-18 miles in July.  All this may change once I face up to the realities of my bone marrow.

That is a day of an unemployed super hero.

Cheers.

P.S.  I had a lunch today with my retired-mentor, BobP, who flew in to do some fishing in Wisconsin.  It was good seeing him.  It made me forget things.  Tomorrow is long run day: 9 or 10 miles.

Life as a super hero


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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