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Third time a charm: A new clinical trial

June 14, 2015

TTomorrow I start my new clinical trial, my third.  Like before I have guarded optimism when starting new treatments.  I would like them to work on me but…  I think that is the point of a trial: to find out.  But each disappointment takes a lot of energy out of me.

I wish they would give out medals each time I finish a trial like in marathons, at least I have something to show for it.  What I have are images, CT and PET scan images, of my completion and…defeat.  (Sorry, maybe next time!)  But as the cliche goes, it is not about winning but how you finish.  That is how my wife would say it: I am still here and standing up.

If it was about winning nobody would even try to run marathons or pursue any challenge.  It is about the struggle, as in “the struggle is real.” – meme.  Cancer is real.  It is a representation of life: the other half of life.  I have learned to see and live my life in constant struggle between life and cancer.  

Today, we went to Holy Hill, WI to pray, give thanks, and hope.  It is the last item in my preparation checklist.  Since my last treatment (May 13) I have been busy taking advantage of the mandatory four-week washout period between clinical trials.  During the break I was able to:

  • Run the Soldier Field 10 mile race on May 23.
  • Visit colleagues in New York for a week.
  • Meet with Cyberknife specialists who gave me hope that they can  address the large tumors in my lungs should my next clinical trial does not work.  It is not a cure but a containment strategy.
  • Pass my pre-clinical trial checkup with my platelets holding now at 256 (100 is the qualifying count) but don’t ask about my CEA level or tumor count.
  • Order anti-nausea pills since this is the expected side-effect of the new drug.
  • Significantly up my total miles for this last week to 30, as if I was in full training.  

I have done what I can in preparation for tomorrow.  The only thing left is to do my pre-chemo ritual: an early morning workout at the gym before going to the hospital.  This new trial will be in pill form instead of infusion.  I have to take the pills everyday for two-weeks, except on weekend, then I rest for two-weeks.  This is my second time to take chemo pills, the prior one was to “bridge” between treatments while on business travel and running Berlin September 2012. The plan for this clinical trial is to do two cycles or two months treatment at least, then scan.

That’s their plan.  My plan is to keep running, avoid fatty foods, up my fiber intake i.e. hemp protein, edemame, kale or fruit smoothie, etc., rest as needed, and fully hydrate.  Stay the course and finish standing up.  I know there will challenging sleepless nights when chills and other side-effects happen but you are there.  

Cheers.

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You got mail …ding!

August 13, 2014

Imiss Dr. B, radiologist from my hospital.  He use to call me at home to give me news about my PET or CT scan (see previous post PET scan results dated April 30, 2013).  Now I get notified via email.  How impersonal medicine has become.

There is some comfort to be appreciated when you hear a familiar voice telling you the good news or there is bad news.  My doctor is there with me: good or bad.

The email reads, new test results are now available at the UofC’s MyChart web portal.  From the web portal, patients can access their medical records, schedule appointment, send secure email to doctors, and view test results.  MD Anderson has something similar and they call it MyMDAnderson, plus they even have a mobile app for IOS and Android.

Inspite of the coolness of all these technologies, I still could not shake off the feeling that I am about to see the results of my PET scan in a self-help web application.  I suppose doctors are just getting too busy now a days.

So I login to the site.  I get to the scan report and start reading it.  Time slows down for me when I am about to get the results of my scan.  I just don’t want to miss anything.  I get to the summary:

“IMPRESSION: Stable to minimally decreased in activity of multiple bilateral lung nodules.”

In English: my new treatment is working!  There are no new nodules and the existing ones have decreased, minimally.  Yes!  Let’s do the lab rat dance.

Go number 5!  Go number 5!  Go number 5!

This is where I miss Dr. B.  We would share a moment of happiness and I would be thanking him profusely, as if there is no tomorrow.  Nonetheless, reading the good news of my scan gave me a sense of relief.  After only two cycles of chemo treatments, I am responding to the new drug.

The minimal assessment is relative; fighting cancer is a game of inches and centimeters.  A 1.4 centimeter or 17% reduction in the size is still, at face value, a response in the right direction.  It gives new hope and is a blessing.  I know how this works, for having to live it in the past six years: You take what is given and be thankful.  Others may not be as lucky I am or would want to be in my place.  I know them.  I see them.  I pray for them.

What’s next is I continue with the trial.  My next treatment is next week so for now we celebrate.  We run and get ready.

Cheers.

P.S.  For the mid-week run, anything above 10 miles again.

 

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Round 2 and a scan.
August 9, 2014

Round 2:  August 5, Tuesday.
If you have to have a hobby while waiting in hospital waiting rooms, choose knitting.  It seems to be the universal thing people do in the waiting rooms and lobbies of Mayo, MD Anderson, and here at UofC.  I am not into knitting but I appreciate them, sadly there are no apps for that.

Sammy was there again greeting me in my assigned room.

“Hello.  Hello.  How do you feel?” in accented English.  I replied that I was feeling good and joke him that he should be into running because he from West Africa.  He just gave a big laugh.

We started late because the trial drug arrived late at the center.  It just means a longer day for me.  I was among the first to arrive at the center in the morning and with the delayed arrival of the meds I maybe be the last patient.  Oh, well.  This infusion center is really busy.  Patients come in, have their chemo, and go home.

While at the waiting lounge, an elderly black couple took up conversation with the people they were sitting across.

“You must be together for many years now?  We  have been been together for almost 68 years and was engaged for 4 years before that.”  Wow.  The wife was the patient while the husband dutifully attend to her slowly.  You would hate for cancer to interrupt their marriage.

Such is life or rather the fragility of it.  It can be interrupted anytime without notice.  But those things are further from everybody’s mind at the waiting room.  Cancer is just…an interruption.  This is our new normal.  The waiting room could have just been another breakfast gathering where people know each other, including the nurses and technicians.  Greetings are warm and pleasant.  Conversations here are open but tempered.  Each is curious as to what type of cancer the other one has.  Each has their own way of coping.  None of us wants to be here but we are here.  We make the most of it.

“Same protocol, Mr. Alvarez.  First the pre-meds then the chemo.” Sammy said.

As the pre-meds take effect, I sink again to la-la-land….zzzzz.  Lab rat number 5 is down again for the count.  I wake up a couple of hours later, groggy, and hungry.  Although the infusion is done, I still have to stay because of all the monitoring and blood test (many blood tests).  My wife and I move back to the waiting lounge and the crowd has thinned.  True enough, I will be among the last patient to close before everybody leaves.  Long day.

The scan: August 8, Friday.
After two rounds of chemo, it is time to see if I am responding to the treatment by doing a PET scan.  These tests are pre-scheduled so all I need to do is show up.  You really feel like an experiment when you have tests lined up for you.  You do not have any control of what happens next during the trial but I also know it is for my benefit…and others.

PET scans as are easy and I have done this many times.  They infuse you with radiated sugar and you just sit motionless or sleep (more zzzzz’s….) for an hour or so.  The idea for the cancer cells to absorb the sugar and scan them for size and activity.  CT scans has more discomfort because they make you drink this prep drink, infuse dye in your blood stream, and then scan you.

Like all tests, it is the results that always drive the anxiety.  In my case I have to wait perhaps until next week for the results.  We are looking for a response to my treatment; a reduction in the size of my lung tumors or their numbers.  Thanks for all the positive thoughts and prayers.

Cheers.

P.S. I had hiccups again after treatment.  Have been recovering good enough to maintain running.  For this weekend, will aim for at least 10 miles again.

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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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PET scan results

April 30, 2013

The news of the result of my PET scan was quick.  Two hours after I have left the hospital, Dr. B called the house and left a message.  Dr. B is the head radiologist at the hospital, and he and I got to know each other well (see related post on August 22, 2012, “A different kind of relationship: the results“).

We don’t play golf or anything, but our bond was established by the news he gives me: whether good news or bad news, he personally calls me.  I called him back:

“Hi Dr. B.  It is Bo.”  After the pleasantries he gets to the point.  He had an optimistic tone in his voice and like many times before he choose his words carefully.

“The results showed stable or smaller multiple pulmonary (lungs) metastases with interval decrease (of tumors) in the previously borderline metabolic activity (when compared to previous scan).”

It means I made progress in stabilizing or shrinking the tumors in my lungs.  Thank you.  It also means, more work (chemo) ahead of me.  The scan also picked up my ascites but he ruled out carcinomatosis or peritoneal metastases, which gave me the poor prognosis last January.  Dr. B suggested for me to see a Hepatologist for the ascites: Great more doctors.

May 2, 2013

at my Oncologist office

“So what’s the plan, doc?” I asked anxiously.  My wife and I were to the discuss the results of my scan and my treatment plan.  However, in the back of my mind I know what he is going to say: more chemo.  There is really no choice with this disease.  I need chemo to keep me alive, like plants need water to survive.

He tells me that he plans to give me a break first before starting up.  That’s a relief but then I tell him of my June travel plans.  He then tells me that I should do two or three cycles of chemo before traveling and that we should start it soon.  Oh, well.  You got to put in the work first before you can enjoy, which is how my life works, and should work for us too.  Back to work for me.

Cheers.

P.S. I start chemo again on Tuesday, May 7.

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#def finance = value

April 29, 2013

Y

ou might be wondering the peculiar way I stated the title “def finance=value”.  I have been taking an introductory online course on Python coding.  I am taking it at Coursera.  Ok, let me explain.

Coursera is among the massive open online courses (MOOC) offered out in the web.  MOOCs are different from other online courses: they are interactive, course materials are delivered via the web, and are mostly delivered by professors in prestigious universities.  My course is taught by four professors from Rice University.  Oh, by the way, did I mentioned that courses are free. There are many MOOCs out there, I just prefer Coursera.

Python?  It is not a snake.  It is a programming language or computer language used to create computer programs.  There are many programming language out there, but Python is the most common or preferred way create a programs by software developers/engineers.  It is named after the 70’s British television comedy sketch, Mothy Python.  Bear with me for a moment.

I also enrolled in a course on Introductory Finance, taught by a nerdy professor from University of Michigan.  So what’s with the sudden renaissance for knowledge?  For one, it will more than satisfy the continued educational requirements at work, and the other it feeds my curiosity (it is also a way to shake off the cobweb in my chemo-soaked brain).  I am curious about big data, a current buzz word today.  I needed a stronger way to parse through massive amounts of data beyond what Excel can give me, thus Python.  I am an auditor, exposed to finance, and believe in strong basic foundation, thus the Finance course.

pointTo the point: I have come to realize that finance, data, and life are inter-related.  The world of finance is not limited to Wall Street; finance is about valuation.  Finance = value: The value we put on important things e.g. ladies purse,  money, time, car, education or life.  There is data behind the valuation on each of things we value and it differs among us.  Many would put value or put importance in having education (to succeed) or car (to go around), while others do not.  Aware or not, we have assigned certain metric to the value of things important to us and we live by them.  It constantly change as we mature or experience an awakening event, like cancer.

You have followed me as my life was touched by cancer.  It changed my outlook in life; its valuation.  I put a high premium on each borrowed day given to me because I was close to facing death and will never out run this disease.  I know how to read the data and its value.  I could quit my job, not study, or stop blogging my experience, but instead I chose to continue and make the best of my current situation.  They are also valuable activities for me because data shows that I am able to make a difference in you: I inspire you to change your valuation of life.

Additionally, I put more value in relationships rather than things.  Relationships are more lasting and can transcends life itself.  It is possible to remember somebody who have passed based on the relationship we had with them.  I like that.   So put more value in relationships; they keep.

Cheers.

P.S. Tomorrow, April 30, is my PET scan to re-stage my cancer.  I have been through this before.  It gives you hope that you have survived this round with cancer, but it does not mean you are cured.  Nonetheless, I am hoping for a clean scan.

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A different kind of relationship: the results

August 22, 2012

am ok. I did not have a restful sleep but my eyes are dry. My morning meditation ritual helped along with a short prayer of gratitude for another day given.

The call came in at 4:02 pm, yesterday, in the middle of a conference call again. My effort to make it a normal day is about to be interrupted. From the caller id I knew it was the hospital, the only question now is who will be delivering the ‘message’.

“Hi, Bo. Dr. B (the radiologist) from Swedish.” Ah, that familiar warm voice. I called my wife to be with me and put Dr. B. on speaker. She greets my wife warmly.

My relationship with Dr. B is unique and defined by difficult circumstances; we are not golfing buddies nor does he run marathons like I do. We seldom talk, socially, and the only time we catch up is on moments like this; when he has to deliver a message, most often difficult messages.

Like an auditor, his words are carefully chosen.

“Although, the scan images does not show conclusively, because the tumors are small, the existing tumors in your lungs showed progressive growth activity. Also, there is a some inflamation in your colon that was detected, which cannot be determined from the scan as tumor activity.”

As he continued to explain, I can see my world slowly shrinking again. I can never get use to this. In the background I hear him use trigger-words that put walls around me: more chemo, colonoscopy, more tests, and doctor’s appointment.

What do I need to do to make this disease go away? WTF. How many more years must I bear this? Useless redundant questions.

There is no subtle way to this madness or in delivering difficult messages, that’s why I love Dr. B. Each time I have a scan, he is there for me to give his professional opinion and heart-felt encouragement. Our relationship has grown with each call. We shared 15-minutes of deliberate and warm conversation, and within that time my life has changed again.

Cheers.

P.S.  Dr. B told me I have to see my oncologist Dr. M on Thursday for my treatment plan.  Back to the drawing board.  Arrgh.

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