Posts Tagged ‘immuno-therapy’

Judgment day: Friday

May 13, 2015

TThis Friday, May 15, is judgement day for me: I will have my scan on that day.  I will know if this new immuno-therapy treatment is working for me or not.  A stable result or no tumor growth is good but a shrinking in size or reduction in the number of nodules would be awesome.  Worthy of a happy dance.

I have been in this situation many times and I still feel anxious each time.  Over the years I’ve had good news and bad news.  I have done the happy dance and have shed tears of anguish.  No matter what, I take what is given.  Just look at me now.  I have made it this far and still standing.  I am thankful.

Friday you might say is marathon day.  It is the day when you know you have put in enough to make it to the finish line.  The marathon gods always know if you cheated on your runs because it will be painful.  Pre-race jitters, like pre-scan days makes me anxious.  I makes me question: “Did I do enough (to rid myself of cancer)?”  Did I exercise enough?  Did I pray enough?  Did I eat vegetables enough?  Is there anything else I can do?

More kale?

Since March 10, I was preparing for this moment.  That was the time my wife and I left for Jerusalem, the start of our holy pilgrimage that included Rome.  It was a journey of self-discovery…and adventure.  In Jerusalem, I ran the half-marathon and visited as many holy sites as I can.  I prayed, knelt, asked, pleaded and wailed to all the holy places that would take my petitions.  It did not matter if it was of the Jewish or Muslim faith, I would go the distance to find a cure for my cancer.

So now it has come to this.  No amount of prayers or exercise is going to change the outcome this Friday.  I know you are praying for me.  Whatever the results, all I know is I cherish each day I am given.  I have put the “miles”, and would readily put in some more for a chance to see tomorrow.  I have savored each moment and I would openly take what is given because life, minus the noise, is just so beautiful.  L’Chaim.


P.S.  I ran four miles this morning, went to my treatment, and will be back tomorrow for another round.  Then, an early CT scan Friday: Judgement Day.  Drum roll, please.

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Taking things for granted.

April 23, 2015


YYesterday, I started the cycle 2 of my treatment.  You might say I started the second set of the same immune-therapy treatment I started March 30.  So far I am doing good other than the mild facial rashes that looks like acne.  It is not too pronounced because I have been taking antibiotics to control it but it is there alright.

With this regiment I am unable to run but I am able to go to yoga and do a few exercise.  I tire easily and have been coughing.  I miss running.  It helps me find peace and it gives me a sense of normalcy.  When I run, especially on a beautiful day, I hear my rhythmic breathing, I feel the crisp air and the warm sun against my skin,  and I start to perspire.  Lately, I have been sluggish and unable to run, which makes me bitter at times.  That’s when I really have to dig deep to put things in perspective.  I may not be able to run but I am still here.  Life is such a tease.

Last Monday, April 20, was the 119th running of Boston.  Lelisa Desisa from Ethiopia won the race in 2:09:17.  He was also the winner in 2013 during the bombing.  I watched it online and tracked a friend (TimU) who finished to qualify again for next year.  What an achievement.  Boston is always a dream for me because of the challenge.  Unlike other marathons, you need to pass a qualifying time based on your age to enter, and that’s the challenge.  I am too slow for this race but there are other races to join.

The trick is to make the most of the opportunity.  I need to tattoo this in my forehead.  I need to hear this when I don’t feel like getting out of bed after a miserable night from chemo rebound.  Also, I need to take things in perspective.  I am still here.


P.S.  Former Archbishop of Chicago, Cardinal George, passed last Friday from cancer.  My wife and I tried to go to the viewing but missed the time slot.  I mourn his passing.  He was also treated at University of Chicago, where I am being treated.  He paid it forward for me.

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Happy Easter.

Happy Easter.

April 5, 2015

Happy Easter, everybody.  Our day started by going to mass.  The church was full and everybody was in their Sunday’s best.  Christ rose from the dead; a day of renewal.  It is a beautiful spring day too and I am grateful to have come this far.

Last Monday, March 30, I started on my new clinical trial which consisted of two drugs: one to suppress the growth my tumor (given Monday) and the other to “weaponize” my immune system to attack my cancer (given Tuesday).  They gave me a loading doze and I really felt it.  I had chills, nauseated, and was just wasted that Monday night.  I don’t know how I made it back to the hospital Tuesday to receive the immune-therapy drug, but I made it.  Then there was the never ending blood tests Wednesday and Friday.

I have recovered now.  Tomorrow is the second cycle of my treatment which is going to be a lower doze.  It does not matter, I will take whatever they give me.  That’s how it is.  They gave me my schedule all the way to end of May so there will be no travel for me for a while.

That’s ok.  Chicago is beautiful during springtime and there is the lakefront for running.  Unfortunately, I cannot have too much sun because one of the side-effects of this treatment is skin rashes.  The sun aggravates the rashes.  I will survive and adjust.  That is the key to this madness, just take what is given and appreciate your blessings.  It’s all good.  We will see the initial results of this treatment next month when I have my next scan.


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Ready and waiting

Ready and waiting.

March 30,2015

II am sitting in the waiting room at the new building waiting to be called.  I have cleared all my test, given a briefing by the research nurse, and my port is accessed.  Today is my first day to received a new clinical trial drug; an immuno-therapy treatment.

Needless to say I am anxious since this is new.  The nurse order anti-nausea drugs and skin rash drugs.  I was told to expect some skin problems like acne (OMG, acne at my age.  Oh well…).  Bring it on.  Today is the chemo drug, tomorrow is the immune boosting drug.

I am already thankful I got this far and entered into this new cutting edge trial.  I try not to put too much expectation on this, after all this is a clinical trial.  We will not know unless we try.  Such is the life of a gerbil on wheels.


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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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Going vegan.
March 26, 2014

It all started as a Lenten challenge: on Ash Wednesday to be exact.  The idea was to give up something for the Lenten season, as a sacrifice or offering.  I love ramen and my wife would be easily tempted with tonkatsu (breaded chicken breast) from our favorite Japanese place, Santouka at Mitsuwa market place.  So that will be our sacrifice.  Prune and grow.

My daughter, Talia, heard about our plans and decided to join.

 “For Lent, I will just eat vegan food” she declared.  Wow.

She does not eat red meat like me but she love cheese.  To go vegan, you have to give up all dairy, animal, and seafood products.  Only plant-based food products, like beans, nuts, soy, grains, etc., are allowed.  For bread or any bakery products, they must not contain eggs or cows milk.  What?  So you can imagine how strict of a diet it is but others have done it.  It is a lifestyle change.

I thought I join her on her journey.  I was already going in that direction before when I started giving up red meat and substituting tofu.  I prefer eating salads and vegetables already, but I still was eating eggs and cheese.  The no red-meat diet helps me during chemo when I get constipated or have my vomit episodes.  I had to strike a balance on eating nutritious food to sustain me and comfort food (ahem…like ramen).

Nonetheless, I saw the vegan lifestyle as an opportunity.  For one, it will be only for the Lenten season (I think) and it would further strengthen my immune system.  Remember my next challenge is an immuno-theraby treatment using clinical trial drugs to fight my cancer.  So I am off on my new adventure.

The first step is buying all these exotic sounding food, like chia, spelt bread, quinoa, almond milk, etc.  My new friend now is Trader Joe’s or TJ.  I was surprise that switching to vegan food was not too difficult, perhaps because of the new taste.  I have now tried or switched to: eating spelt bread, steel-cut quinoa oat meal (this is good) for breakfast, edemame nuggets (looks and taste like chicken nuggets), tofu sausage, soy-based cheddar cheese (great for grilled cheese sandwich), and awesome vegan desserts.  I even made myself scrambled tofu for breakfast and dinner.  Bam!  Look!


Scramble tofu with tomato, onions, sweet baby bell peppers, and parsley.  Yummy!

Scrambled tofu with tomato, onions, sweet baby bell peppers, and parsley. Yummy!

Now, let me clarify things first about the vegan lifestyle.  You can still gain weight eating vegan food, especially with their wicked desserts.  While healthy, vegan food does not automatically equate to organic food, vegan just means no animal products.  Beans and nuts, depending on portion size, has high caloric content.  So there’s vegan food and organic food: two different things.  For me, if it is a choice between vegan food and organic food in the grocery aisle, I go for organic.  I don’t need more chemicals or toxins in by body.
The point is to stay healthy and strengthen my immune system, and I would do anything to stay healthy.  Bye…bye…Santouka ramen, hello Chicago Diner.  OMG!


P.S.  This Sunday is the 8K Chicago Shamrock Shuffle race.  I will be running it again with my wife and my oncologist.  Dr. M is already getting stressed out for he has not run this far, so it will be fun.  The forecast is 60F and sunny.  Perfect.  I love life.


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March 16, 2014

LLast week I had my appointment at University of Chicago (UofC) Medicine.  It was very promising.  I also learned something new about my cancer and family history.  From the results of my genetic testing, they have identified a mutated gene called RET that I may have inherited.

This mutated RET is also the cause for Hirschsprung disease that my first-cousin, Tess, may have inherited when she was born.  I remember she was operated, they took out a couple of inches of her large intestine.  I was a kid back then and would just remember seeing the stitching scars in her belly when we go swimming.  So I am blessed with this mutated gene, now what?

How about immuno-therapy?  Say what…????  The way Dr. R explained it, you use the person’s immune system to fight cancer.  Like it or not, each of us have cancer cells.  Some or most of us are lucky, due to good genes and healthy living, our immune system is able to keep the cancer cells in check.  In my case, I inherited a cancer-triggering or mutated RET gene.  So this misbehaving gene is blocking my immune system from doing its work of neutralizing my cancer.  Such a troublemaker!

Previously, all my treatments or chemotherapies were intended to poison the cancer using all sorts of drug in different doses and combination; I have taken a lot in the past six years.  Chemo has its benefits but it is non-discriminate.  It kills cancer cells as well as good cells.  Chemo has also kept my cancer at bay but my cancer is no longer responding.

We are now switching strategies.  The plan is to target my mutated RET gene that is blocking my immune system from doing its work.  The way Dr. R explained it, who is an American football fan:

Think of the Running Back as your immune system which is being blocked by a Tackle, the RET.  We neutralize the Tackle so the Running Back can score.

Sorry, Doc.  I am not too much of fan of football.  Soccer, especially English soccer, is my game but I get it.  Spike the drink of the RET goalie so my boy Luis Suarez (of Liverpool) can score.  Go Liverpool!

Currently, they have a Phase 1 trial that can fit me.  However, the trial is for melanoma but it addresses the same genetic RET mutation.  We need to get approval from the manufacturer, Bristol Meyer Squib, to use the trial drugs: Nivolumab and Lirilumab for the nodules in my lungs.  Once we have the approval, I am off to my “olympic” trials.  For now, we wait.


P.S.  My wife and I did our runs doing a little bit over three miles.  Will get there.  The goal for now is the 8k Shamrock Shuffle race on March 30.  Happy St. Patrick’s Day!

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Giving up an inch is like giving up on hope

February 19, 2014

It moved again.  My CEA (tumor) count went up again—slightly, as my nurse told me.  True.  An incremental .10 increase is small compared to a full point increase so I should not be worrying.  (Note:  I had another blood test a week after when my platelet were low to check if I have recovered and if there are any CEA activity).

If you follow the Sochi Olympic or any world class events, the difference between a gold, silver, bronze or a world record is measured by centimeters, inches, or micro-seconds.  At this level of competition it requires years of dedication and sacrifice.  Everything must be perfect the moment you step on the ice or the starting line of an elite marathon event.  You don’t give an inch, a micro-second, or a goal until it is time.

Similarly, I may not be a world class athlete but each time I give up an incremental increase in my tumor count, I feel robbed.  I hate it.  I have made many sacrifices and my cancer still manage to shave off something out of me.  It is slowly thinning out my hope for cure.  Besides I don’t have anything to spare especially when my CEA count is more than 100% beyond the normal threshold.

I am not giving up.

Today, I consulted with doctors at the University of Chicago (U of C) Hospital to see what are the possible cancer trial programs open for me there.  I am now looking at experimental drugs that might fit me.  Like all consultations I have done from Mayo to MD Anderson, and now U of C, there are only possibilities and hope.  This is the nature of cancer: there are many elements to consider.

They believe that my immunity is strong that I am able to co-exist with my cancer or that my cancer is weak.  They also believe that the CEA tumor count can be misleading.  To settle matter, they recommend a CT scan for comparative analysis. This way it will be conclusive if my CEA count is giving me false positive readings.  A growth in my tumor means my CEA count is giving me the right signal; otherwise, they are treated as noise.

They also believe I can fit into an immuno-therapy trial because of my profile.  It is like weaponizing my immune system to target my cancer.  Or I try this other chemo pill.  So, there are options and possibilities which is all what I can hope for.

It also means I have just broaden my team to help me beat my cancer at world class level.  I willing to do the work and make any sacrifice to take back that inch I was robbed.  It starts tomorrow, when go back to my unfinished chemo.


P.S.  A surprise “care package” came in yesterday from my German friend FrankH.  I appreciate it.  Thanks.  (I wrote about FrankH in a post dated November 7, ‘I am ready.’)

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