My CO-1686: 7th Month, First 9-Week Scans

October 27, 2014
I’ve got scanxiety under control but on this day, the eve of my first 9-week CTscans in the CO-1686 clinical trials, an anxiety of a different variety tried unsuccessfully to overpower me. The cause: I did not know where to go for the CTscans due less than 24 hours away! The UCLA Scheduler gave me the date and time but not the place. What was she thinking? Time was running out. I needed to know if my husband and I should make the arduous journey to LA first thing in the morning. So I emailed the Scheduler, cc Trial Coordinator and Good Doctor.

UCLA is so into emailing that they have rules in compliance with the California Healthcare Act. However, the rule makers forgot to specify how to form sentences for emails. So off I went with my own style of sentence construction. My email went like this:

“Tomorrow, I get my first scans at UCLA.
I would like to do my part in the advancement of science but I need to know where the scans are conducted in UCLA Santa Monica. I am a retired professional engineer and an awesome user of the GPS. An address will suffice to get me there. Thanks.

Soon after I hit the “Send” button, a response boomed in:

“Good afternoon,
I have confirmed the authorization request that I submitted as URGENT was received and is currently pending the medical director’s review.
I hope to have an answer by the end of the day. I will keep everyone informed on the status.
Reimbursement Specialist”

Reimbursement Specialist? Where did this character come from? He or she was not in my email cc list. Then light dawned! It’s about insurance authorization. When did the Reimbursement Specialist submit the URGENT authorization request? At 3:15pm, the prospect of approval before 5:00pm from NM appeared dim. The situation would have rattled any other patient but not me. True to my character, I faced the crisis with aplomb. I calmly finished last Sunday’s LA Times Crossword Puzzle and did my routine yoga.

At 4:17pm came another email from Reimbursement Specialist, cc Scheduler, Trial Coordinator and Good Doctor:

“After speaking with ABQ Health Partners, no authorization will be required for office visits, labs, and scans while on clinical trial. We will bill Medicare directly and the patient will be responsible for 20% after Medicare pays.”

“So where do I go for the CTscans?” I Replied to All.

Finally, Scheduler emailed the directions to the Radiology clinic. It was 4:53pm. Talk about cutting it close!

Perhaps the devil-may-care attitude can be expected from somebody who, 100 years BC (before cancer), survived major life upheavals. What didn’t kill me toughened me. In addition, seeing my relatives’ first-hand mortality motions has turned me into a pragmatist. Which reminds me of my first husband – the one who widowed me after 35 years. We were in the same room 30 years ago when the doctor informed us that my father-in-law’s diagnosis was cancer. Horrified, my husband asked the doctor, “Is he terminal?” The doctor, who resembled Albert Einstein, narrowed his eyes at my husband and said, “We are all terminal.” The four of us – Dr. Einstein, my husband, my father-in-law, and I – broke out in laughter. A morbid sense of humor always delivers!

October 28, 2014: Day of the CTscans
Radiology Clinic

The radiology technician said she was going to give me a barium milk shake to drink before the CTscan. She named three flavors from which I chose “Mochapuccino.” The barium drink is taken for the GastroIntestinal (GI) examination. When ingested, the solution makes every nook and cranny of every inch of the large intestines, rectum, and other innards transparent for the CTscan machine to take clear and telling images. The beverage is also called barium enema. It did live up to its name that evening!

Another preparation for the CTscan was inserting the stub-out for the contrast solution in my arm vein. Women populate the vein-tinkering trade. For the first time in my 26-month cancer journey, a male was going to perform it for me. I was curious if the human male’s DNA would make this mid-30’s Asian do the task differently. I watched him like a hawk. First he strangled my arm above the elbow with a flat elastic band, causing my arm to go limp. Then he cradled my elbow in the hollow of his left hand. He isolated his right pointer and middle finger and went “tap tap” on the front of my elbow as if to awaken a vein. Then he swirled the fingertips and massaged the wide-awake vein, then inserted the needle. Something in the way he swirled his fingers on my skin bordered on the erotic. Either that or I had become neurotic. I swore, One more swirl and I’d whisper in a breathy voice, “Do you like older women?” LOL!!

October 29, 2014: ECG, Bloods, etc.
Doctor’s Zone

The Mexican-born Med Tech chatted incessantly that morning. His talk ranged from chemo to bizarre ethnic foods. He zeroed in on a Mexican delicacy called “burrunates”, which consists of beef intestines stuffed with onions and spices. I love “burrunates” but it was not an appetizing topic after a memorable gastrointestinal CTscan.

Scans – in the words of the Onc, “Super Stable.”
ECG – great
Glucose – under control
Cholesterol – ideal
Other bloods – within normal range except magnesium, a tad low. I need to load up on turnip greens. Soul food beckons me.
The Trial Coordinator gave me my CO-1686 pills for the next 21 days.

“See you in three weeks,” said the hottie Onc, a big grin plastered across his face.

The Narcissist

Once upon a time, there was a queen named Queen Diva Poksa who told some pretty wild stories to her delightful fiefdom of Tarceva Divas and Dudes. Of course the stories were all about her who was then on Tarceva. One of her stories went like this:

I thought I’d never make it out of the house this morning. I got stuck in front of the mirror, admiring my long, luscious Tarceva eyelashes.

“Let’s go!” yelled my husband from the lower level of the house, breaking my fascination with the awesome Tarceva side effect. “We need to be at your Onc’s office by 8:00a.m.”

His call to action reminded me that yesterday I had made an emergency appointment with my Onc. It is people like me who mess up doctor’s schedules; people like me who are selfish individuals who find tremendous amount of joy in putting their needs above all others and inconveniencing them.

Fast forward to the Onc’s office.

“What’s the topic today?” My Onc asked, smiling. I noticed his lung-cancer-caused thinning hair was plastered on his scalp by heavy pomade.

“It’s about me,” I answered.

“Of course,” he laughed. “It’s always all about you.” And we laughed.

I told him: “Last Saturday I noticed bruises on my torso, from hip to hip across the belly button. I posted on Inspire, describing my rash in excruciating details and asked opinions from the Tarceva Divas and Dudes. A Diva said it might be meningitis rash. I googled meningitis rash and frightening images similar to my bruises showed up. Next thing I knew I was in a hospital emergency room being totally ignored by everybody. People with stethoscopes dangling from the necks and men and women in funny hospital uniforms were chasing after blood and gore. I thought, Next time, I’ll come in a mini-skirt with fake blood splattered on my legs to get all the attention. Anyway, eventually the ER doctor told me all I had was acute dermatitis and ordered me to see my Onc. So here I am.”

He gently lifted the seam of my blouse to take a peep at the bruises. I was hoping he would tell me to take it all off.

“It’s shingles!” he gasped.

From dermatitis to shingles! That’s quite a spread. What does he know? Whatev. As long as it was not meningitis rash! I knew the rashes would disappear like all the other Tarceva rashes in the past. Besides, while I was growing up, until I beat seafood allergies, they gave me bumps, rashes, hives, name it. I delighted in telling anybody who cared to listen how I got them and how they disappeared without treatment.

Fast forward to today.

Tarceva and I parted seven months ago, when I entered the CO-1686 clinical trials. But in case I have to go back to it, I still have enough Tarceva pills to last me until I reach ripe old age, which is pretty shortly. I have new issues now but all the tell-tale signs of the Tarceva battles are gone.

The moral of the story: Whatever bothers you, that too shall pass!

My CO-1686: A New Normal

OMG! My appetite has returned with a vengeance. My mind meanders in Food City, lost big time! Anymore, when watching TV, I stay clear of the food channels, but it doesn’t matter. I’d be watching true crime in Investigation Discovery channel, and I’m totally oblivious of the murder clue that could blow the case wide open. Instead, I’m obsessing at the food propped at the crime scene. My husband and I’d be walking by the creek and along comes a short bald hiker. His head reminds me of a “jicama,” which could quench my thirst. I’ve already gained two of the 15 pounds lost with the help of Metformin. I want to go back to normal.

Normal! That word has been redefined twice over the last 26 months. My normal – one hundred years BC – that would be Before Cancer diagnosis – had been to pig out then go on a diet as soon as I gained 10 pounds. I’d go on a high-protein diet and if the scale didn’t budge quick enough, I’d fast for 48 hours then continue eating small. That sure took care of the weight problem for a few months.

At Google University, everybody says living with cancer is all about getting used to a new normal. Yah, yah, yah.

In September 2012, when I started taking Tarceva, the targeted-therapy once-daily pill developed for special people, the era of a new normal dawned on me. I’d wake up in the morning and see a parched face. I’d look at my arms and legs and see thirsty limbs. Slathering of coconut oil could only make the skin look halfway nourished. Tarceva sucked the moisture out as soon as it was applied on my skin. Fortunately, the mutant long eyelashes saved the day. I batted those eyelashes like only a self-proclaimed former beauty queen could. The senior babe never had it so good. Daily, I concentrated on time-of-day calculation to synchronize pill swallowing and food eating. Timing was everything. Outside the house, I mapped out coordinates and strategized the nearest potty wherever my husband and I went. I slapped a hat or wig on my head to cover up the finger-in-the-electric-outlet look. I suspended all belly-dancing activities while acute dermatitis ravaged the complexion of my gorgeous torso. And the toughest decision of all – I gave up all plans of taking my activity to the next level – pole dancing.

When Tarceva started to fail me, I entered the CO-1686 clinical trials. On April 15, 2014 the Era of Tarceva-based New Normal ended, making way the Clovis-Based New Normal. As soon as the last trace of Tarceva left my system, natural oils from within my body surfaced to my skin. I have the joy once more of sliding the palm of my hand on my naturally moisturized smooth arms and legs. In the beginning I got so excited about the tactile sensation that I thought about standing in the corner of Happy and Healthy to offer passers-by a feel of my new skin. Over the Octagenarian’s dead body! I am able to eat again anything, anytime. The Clovis drug does not care what time of day it’s taken as long as it’s taken with food. My hair is now Tina Turner kinky, my new normal ‘do for now.

Would you rather have diabetes or cancer? That seems to be the theory behind the CO-1686 drug. I’m sure the Big Pharma honchos did not plan it that way, but it’s happening. The drug keeps the cancerdudes at bay, but for some reason, when the trial participant’s body metabolizes it, the blood glucose rises and induces diabetes (hyperglycemia). Let’s keep it simple and just talk about the Data Dame. That would be me. For some reason it took my system four months to metabolize the drug, which eventually lead me to Metformin. From what I’ve read, many participants got induced hyperglycemia from the get-go and were put on Metformin right away.

According to my Onc’s Onc, diabetes is not a bad disease if it is managed. My new normal is now of based on a managed drug-induced diabetes. The Diabetic Data Dame’s New Normal Day is based on three “mantras”:

1. A diabetic must monitor her blood glucose. Around 7:00 a.m., I poke my finger with a lancet, get a tiny drop of blood on a computer strip, insert it in the testing thingy, and record my fasting glucose number. My UCLA Onc and I want to see a number around 150. The new ritual – a big breakfast and swallowing of the canoe-shaped horse pills (4 Metformin and 3 Clovis) – follows. I take the other 3 Clovis pills 12 hours later. Before marching to bed, I take another glucose test. This time my UCLA Onc and I want to see a number around 200.

2. A diabetic must not get hungry. I prepare my munchies for the day. I peel an apple and an orange and slice them up and put them along with five grapes in a container that I tote everywhere. In between meals, about every 30 minutes, I munch on a couple of fruit slices and drink lots of fluids.

3. A diabetic must exercise. My husband and I go all over Southern Orange County as we walk and do fun things like having clam chowder at one of the many restaurants that seem to beckon us, watching the waves roll in at Laguna Beach and the boats sway to the soft breeze at Dana Point Harbor, and buying exotic groceries at the Asian market in Irvine. What a life!

What is there not to like about this new normal as long as the CO-1686 drug works?

My CO-1686: Metformin and Nausea

In my previous CO-1686 post the Good Doctor, in response to my complaint of feeling like caca, allowed me to get off the 2000mg Metformin, return to 1000mg, and ease back into 2000mg when I started feeling better.

Without defined boundaries, my inner mad scientist has a tendency to meander, especially armed with my knowledge from my private clinical trials and my coziness with buddy Dr. Google. For almost a month and a half, I did not contact the Good Doctor. Instead I monitored my glucose and kept a diary.The fasting numbers were good (100-115) on 1000mg and I was feeling fine until one morning, my fasting glucose shot up to 150. The following day, I raised the Metformin to 1500mg. But the glucose number went up to 175 anyway. It was getting out of control! I went into panic mode. I did not want, but was going to have to return to 2000mg the next day. Wouldn’t you know, the Good Doctor emailed me, that same day! One sentence, in his exact words, “How is the reduced Metformin coming, Celia?”

Busted! I told him the whole monitoring story and that I was going to start the 2000mg that very day. To escape, I took the opportunity to complain about the yucky bitter taste that Metformin left in my throat, as if I had been licking a tin can of sardines all day. He suggested that I ask my UCLA Onc about extended release Metformin, which is easier on the digestive system. Subsequently, my UCLA Onc did prescribe Metformin 2000mg ER (extended release, same as time-release) in the form of four 500mg oval horse pills under strict orders NOT TO CUT THE PILLS, or suffer digestive complications, and to take them all at once. The blue-ribbon Pill Cutter tucked her tail between her legs!

The first day that I took the four Metformin ER pills and three CO-1686 horse pills at the same time at breakfast, I realized that being a self-professed amazing woman is not enough to fight nausea. It is a major challenge. I needed more moxie to tackle it. After four days, I think it’s safe to say I’ve won the battle and write about it in past tense.

If you are looking for medical advice, you came to the wrong blog. I am not a physician. In fact the closest that I came to becoming a health care professional was in senior high school in the Philippines. College was just around the corner and I was deliberating on what course would lead me to what I wanted to be when I grew up. Becoming a Nutritionist made the short list of options.

The science of nutrition has always had a special place in me. The fascination started in “Health” class where we studied the proteins, carbohydrates, vitamins, and minerals that food provides the human body. Because of my passion for nutrition, I remember being the best student of the subject. No one could touch me when it came to nutrition. I owned the subject. Most of my former classmates would probably dispute my claim but some of them are dead now and those still kicking would rather monitor their blood pressure or marvel at their hip replacements than question my academic recollection.

So there.

How did I fight nausea while 2000mg (4 pills) Metformin and 750mg (3 pills) CO-1686 pills carpet-bombed my system the first few days?

1. I took them with plenty of food. A cracker or a banana did not cut it. I filled my stomach with food to provide enough cushion for the canoe-shaped pills to float around. Imagine seven canoes in a swimming pool and not bumping its walls.

2. I had the Onc prescribe something for my post-nasal drip.

3. I dug deep into my data base of old Oriental tricks for comfort foods my mother fixed for us kids to soothe our upset stomachs. I remembered the boiled rice dish “congee” to the Chinese, “lugaw” to the Filipinos.

My husband and I bought ginger root and scallions for my “lugaw” at Stater Brothers. As we were walking to the car in the parking lot, my husband remembered the nausea cure when he was a little boy.

“My mother used to give me Coca-Cola syrup for nausea. I wonder if the drug stores still sell them?” he asked.

My husband is much older than me. I enjoy saying that. He turned 80 last month. There’s a ton of wisdom and knowledge in an Octogenarian’s brain, if it still works. This one is sharp as a tack. I don’t dare lie to him. His memory is like a steel trap.

“Honey,” I said, “The last man who ordered that product probably died in World War II. I can not imagine Coke syrup still in the market.”

“Some things don’t change. Let’s go to a drug store right now.”

“Let’s do it tomorrow.” I was anxious to cook and eat my “lugaw.”

“We’re up and about and there’s Rite Aid Pharmacy.”

We’re retired. We had nothing else to do. Why not solve the mystery of the missing Coke Syrup there and then?

We posed the Coke syrup availability question to a twenty-something Asian chick working inside the Rite Aid cage.

“OMG,” she exclaimed, “I have so never heard of Coke Syrup.” In search of validation, Miss Diplomacy asked the other twenty-somethings in the cage. They all agreed with her.

Fortunately, Miss Diplomacy thought of looking “coke syrup” up in the pharmacy bible, a thick catalog filled with very fine prints. She found it! But first, she had to know if she was still allowed to order it. Perhaps tired of the two faces on our side of the cage, she sent us home. She’d call us when the Coke syrup is available. After two days, she did.

The cola syrup came in a four-ounce bottle. I read the main ingredients – sucrose (sugar), phosphoric acid, caffeine. It simply said “for nausea” and how to take it. I tried it that evening. Which takes me to number

4. Cola syrup. It works.

That’s my story and I stick to it.

My CO-1686 Dateline: West Coast

I’ve taken my act to the West Coast – closer to Hollywood – by popular demand from my fans. That would be my husband and my son. The growth in the fan department has been anemic, but the quest to be discovered continues full speed ahead! The move from Albuquerque, NM to Southern Orange County, CA certainly would cut down our house-to-clinic mileage, save on hotel and gas expenses, and give me generous access to In-and-Out Burgers. Let’s not forget sushi bars in every street corner. I’m hooked on raw Omega-3. But of course, I’ll miss the world-renowned Good Doctor. We did not have the opportunity to do the “abrazo-beso” kind of goodbye but we managed to email our sentiments. I’m sure he’ll not miss me, but I’d bet there’s a spot in his busy brain for Brazen Tarceva Diva. There are not many of that ilk floating around.

One would think CO-1686 is CO-1686 anywhere – inside or outside the United States, on the Rocky Mountains, or at the shores of the Pacific Ocean. The trial honchos in UCLA own me now. Starting from Cycle 9 of the trial, my official nose-pullers will be the trial site healthcare professionals at THE UCLA. Go Bruins!

My first visit with the New Good Doctor (NGD) started one week early. I had to make sure all the medical records were transferred and referrals for insurance purposes were submitted. I signed more papers than the law allowed. Then, as the appointed hour of eyeball-to-eyeball meeting with NGD drew closer, the physician liaison emailed me instructions consisting of reminders about the papers that I had already signed, all medical records that needed to be transferred and insurance documents. Belts and suspenders kind of thing. The instructions also included a map of and written directions to NGD’s office, a sheet of paper showing the parking rates and methods of payments, five pages of medical history forms that I seem to fill out every time I step inside a hospital zone, and a frightening e-mail consent form that instructs a patient in painful details how to compose and use an e-mail according to California Healthcare Law. I’m already missing the more democratic emailing process at the Rocky Mountain site!

October 8, 2014

WOW is the word for my first day at UCLA! The beauty and efficiency of the facility blew me away! When I went from Albuquerque, NM to Aurora, CO, I, the hick from the sticks of the medical world, immediately saw the difference. I thought, Whoa, this is how the big boys play. Then UCLA! I said WOW, this is how the bigger boys play. Believe the rating system!

The day started with the Medical Assistant showing me, a new patient, around. There’s coffee or hot chocolate there, he said. I liked that. Then a Med Tech, a lovely Peruvian young lady, took my vitals: Blood pressure super good; weight where I want it to be after 15 pounds lost; height no shrinkage no gain. Then she did the ECG. Perfect. She did not do a second one after two hours. Beginning Cycle 9, only one ECG is done.

While I was still lying face up on the examination table, Miss Peruvian drew 15 yes, fifteen, vials of blood. I wondered what happened to TEN, the number for the earlier cycles. While it did not hurt, it seemed like she took forever. My husband told me later that he watched the bloodletting process and noted that my blood flowed rather slowly. My blood had gotten thicker in the west coast! Maybe it’s all the menudo and wasabi that I’d been consuming! We decided later that next time gravity might help speed the flow in the sitting-down position.

Then came the Trial Coordinator with more paperwork to sign. She said there have been amendments to the trial protocol to which I needed to agree. I came to UCLA with an agreeable frame of mind so I went signing and initialing away. Everybody was happy.

And drum roll….entered the new Good Doctor! A young man with a shock of dark curly hair framing a handsome face, he was a hottie! He has the perfect height. I have a thing against doctors or waiters who are too tall for their jobs. Obviously my Onc’s Onc and he had had a small conversation about the new girl in town (that would be me) and he smiled a lot baring a beautiful set of teeth.

We reviewed my glucose numbers. Fasting glucose up to 150 is good but he wants daytime glucose readings to be under 200. He said Metformin 2000mg will make that happen. I talked to him how Metformin gives this bitter taste in my throat, as if I had been licking a tin can of sardines all day. He prescribed the time-release version, which he said, is easier on the digestive system. He prescribed Flonase for my post-nasal drip. I can’t convince any of the Oncs that the post-nasal drip is a side effect of Metformin. For his final act, he went through the stethoscope motions on me.

With that, we planned on seeing each other in another three weeks at which time I get my nine-week scans.

I had a sense of excitement leaving the new clinical trial site after the first day. I got the cartwheel feeling again, but man, LA traffic is not conducive for that kind of activity.


Congratulations to this blog! In this post the 10,000th view will occur, according to the statistics! Imagine that. And congratulations to its followers. Your views belong in that historic number.

I discovered the statistics or “stats” page of this blog one day when I became curious about the freebies that WordPress gives its bloggers. One of them is the stats page, which only the blogger and WordPress can access. The stats page shows the number of views in a 24-hour period broken down by country, the posts being viewed, and how the viewers found it. Interesting! Don’t ask me how the data got there. All I know is that I am a freebie kind of blogger!

The statistics “10,000 views” is peanuts for long-time bloggers and for new ones who have been extremely successful in a short time. Getting the 10,000th view is a milestone for a blog whether it happens in one month or at the end of the millenium.

Ten thousand is ten thousand in any language. It’s an awesome number. To get a sense of its magnitude, imagine 10,000 dollars; 10,000 bee stings; 10,000 virgins; 10,000 nodules. Dig? Okay, dug. Now we agree the 10,000th view of a blog is a milestone to reckon.

My blog site is austere, if you haven’t noticed it. It has no colorful photos, not even of me and my new CO-1686/Metformin svelte figure! The site only contains catchy titles and words of wisdom straight from the heart, shot from the hip. Working it is my kind of fun and hopefully I’m sharing useful information and sparkle dust along the way.

As I mentioned in a previous post I started blogging just to update close family members and friends on how I’m doing in the CO-1686 clinical trials. When any of them asked me “How are you doing on the trials?” I’d tell them “Read my blog.” In other words, my originally intended audience was under duress to read each and every one of my posts! Success through intimidation.

Surprisingly, I received supportive comments from folks outside of the intimidated inner circle. The encouragements came from cancer patients and caregivers who had followed my routine when I was volunteer Head Diva at TARCEVA DIVAS AND DUDES. They said, to the effect “Keep blogging. We’re enjoying it.” In particular, someone emailed me, “Love, love that biopsy story!”
My kind of reader…we have a match!

As it turned out many people from around the world share a common interest in this blog as evidenced by the stats. The majority, about 70%, of the viewers are from the United States, followed by Australia, United Kingdom, Canada, and India. The other sprinkling of viewers come from over 60, yes six-oh, other countries.

I think viewers go to this blog because (a) There are Tarcevans and CO-1686 clinical trials inside and outside the United States. Viewers want first-hand information; (b) Cancer is an equal opportunity disease regardless of geographical location. Viewers look for support; and (c) Humor and laughter are universal. Viewers want or need a little distraction.

I must confess, being an engineer to the bone, I became a “stats junkie” in the beginning. I was constantly checking on the stats, very curious who are these viewers, when and whence they come. I’d post and my eyes would glisten with delight at the immediate spike of views on the chart afterwards. I’d try to figure out how many people are interested in CO-1686, how many for the other topics, how many are for cancer, how many are for a chuckle, how many are just plain nosy. After each post, I’d see, for example, “Botswana 1” or “Trinidad and Tobago 1” and I’d wonder, could it be the same person every time, or a new one each time? When I was awakened at the wee hour of the morning, I’d look at who’s looking at the blog. It was like peeking through a telescope and finding a stranger with a telescope peeking at me! Then one midnight, as I was reaching for my smartphone to check on the stats, I said, meh! Who cares? I got over it.

With the 10,000th view, I feel like celebrating big time. I thought of buying a tutu skirt at a thrift shop, investing on a “10,000 VIEWS” poster, standing tutu-clad at the corner of Healthy and Happy, and waving frantically at anybody who makes eye contact. I decided against it. I thought I’d just take this opportunity to thank the readers of this blog. It’s the decent thing to do and the price is right.

So here I go: Thank you, dear friends, relatives, readers, and followers, whoever and wherever you are, for making me feel that I’m doing something positive and productive. I give special thanks to those who have taken time to comment on some of the posts.

Say something. I’d really appreciate it. But I understand. Some people prefer to remain closet blog followers. 🙂 I respect that.

Next post: My CO-1686 From the West Coast!