First Three Months on Tagrisso

Happening soon! I am talking about the upcoming CT Scan and blood tests this month after my first 90 days of taking 80 mg of Tagrisso once daily.  I had been popping the pills religiously at 6:00 every night except for one evening when I completely forgot all about it.  What happened was, three Foodies picked me up at 4:30p.m. for a 5:00p.m. seafood dinner at Bonefish Grill. Six o’clock simply got lost in the hoopla.  It happens when a mug filled with an awesome designer draft beer and a heaping plate of bang-bang shrimp are strategically placed in front of my eyeballs.  It was not until midnight that the missed Tagrisso dawned on me.  I decided then and there that the occasion had risen to switch Tagrisso-taking time to the crack of dawn, as in 6:00a.m. and get it out of the way for the day.  It does work much better.

Tagrisso continues to give me zero nasty side effects:  no upset stomach, no shortness of breath, no fatigue, no diarrhea, no constipation, no rashes, no dry skin, no pain, no swelling of anything. Nothing.  I get additional bronzing and Vitamin D directly from the California morning sun without adversarial effect.  I keep a vigil on my eyebrows to catch any signs of bushiness. I scrutinize my eyelashes daily for indications of becoming mutants. As a matter of fact, I have noticed changes.  My eyebrows have developed a new growth pattern.  The outer ends curve upwards like handlebars.  And the hairs are coming out long and white or gray.  I have become the female Mr Clean! I’ve trimmed them and plucked the wayward hairs once already.  I don’t blame Tagrisso for the graying.  After all I am waaay past the age of innocence.  My lashes that Tarceva left stubby have been growing back darker and longer, making the eyes more soulful and fraught with the come-hither look.  This development is getting me all stoked!

I’m truly curious what the upcoming CT scans will reveal.  Is the adrenal occupier still on its perch? Then there’s the Flying Saucer at the bottom of my left lung – the portion of the tumor that Tarceva did not wipe out but Rociletinib kept at bay for nearly three years.  Did it grow bigger, get smaller, or stay the same? What happened to the Milky Way in both lungs? Are the mysterious tiny nodules still too many to count? What are they, anyway? This is exciting!

This upcoming CT Scan would be my first outside the university environment. Since my cancer diagnosis in 2012, all my cancer treatments, tests, and scans had been in a succession of four teaching hospitals: University of New Mexico, University of Colorado, University of California in Santa Monica, and University of California in Irvine.  Now I am with a one-man-band Onc in Southern Orange County.  Ta ta to stardom or diva-hood in a one-man-band atmosphere.

Since dropping Rociletinib, the CO-1686 drug, and starting Tagrisso, I have not set set foot in ol’ Club Med (UCI Orange).   Life is more enjoyable when it is not designed around three-week blocks of time.  Life is so much simpler without drug-induced diabetes and without Metformin. Life is a beach indeed.

My son, his wife, and their ten-year-old son – an only child – the one who they thought would get past statutory age still unclear on the concept of rhyming, visited me for five days in my manor in the retirement resort living at its best.  I delighted in the opportunity to host them.  However, having given up the vehicle to be true to my new minimalist lifestyle, I became the tourist!  In their rented car, they hauled me around town.  We hiked a steep trail that took an hour and a half round trip.  We gloated over our accomplishment of making it to the top where we could see the grandeur and beauty of the Pacific Ocean.  My chest swelled with pride in going to toe to toe – albeit a tad slower – with the young ones during the ascent. But the descent was another story.  My son had to hold my hands.  Otherwise, my bod rolling down uncontrollably to the bottom of the canyon like a  fallen log was a distinct possibility.

I miss Dr Brevity and his staff.  Obviously the feeling is mutual.  Out of the blue his RN took time from her extremely busy schedule, phoned me and asked how things are going. The trial coordinator sent me a social media message saying “I am missing you that’s all.” I like to think those sweet thoughts could pulsate vibes to the CT scan machine to take wonderful images during my scan.  Wishful thinking is good.

My CO-1686: A Reset and a What?!

I take my responsibility to share information as seriously as I take my responsibility to provide sound whenever silence exists. This post is a shout-out for my durable comrades in the CO-1686 non-trial and a special howdy for my friends and the lurkers who warm my heart.

Beginning in May of this year, my fasting glucose rose gradually again from the normal of below 100. By August, it was 167.  There was even a 193 reading, a disconcerting number to diabetes managers, but  Dr In-and-Out did not seem concerned.  He kept reassuring me, Labs are good, despite written report warnings High! Pre-diabetic!  I wondered what readings would excite the Good Doctor.

Being a Google University (GU) scholar, I tried to lower the blood sugar numbers on my own.  As an engineer, that’s what I do – solve problems.

I took Metformin religiously, even doubled the dosage. Nothing happened.  I eliminated sugar from my diet. No effect. I examined my stress level. Zero. I’m not the stress kind of gal. In short, I failed to yank the numbers down. Then one day, the light bulb over my head flashed. The perfect solution to my blood sugar problem descended upon me! I stopped drawing blood from my pinkie and gave up reading my fasting glucose numbers altogether. What I didn’t know didn’t bother me any more.  What a concept!

At the same time that my glucose numbers were rising, Charley Horse returned to my life. It seemed like every time I moved, a cramp threatened to happen. My toes would lock in awkward positions. Fortunately, I sensed the menace’s arrival.  I stood up, paced the room wherever I was and the would-be cramp went away. When a cramp threatened me in the swimming pool, I quickly dogpaddled to the deck.  I followed religiously my Hydrate, Hydrate, Hydrate mantra but the cramp scares kept on coming. All the hydration motions did was award me more frantic trips to the potty.  The heck with it.  I chalked it up to human aging.

Then came my CO-1686 43rd cycle Onc appointment, which I had not considered when I took a grief break. The appointment date left me without the Pills for five days. In other words, I inadvertently took a drug holiday, which consequently brought dumb luck. I became cramp-threat free and my fasting glucose reading mysteriously returned to normal. Jubilation! My body had done a reset.  Feisty Heifer did a happy dance.

Two days later I had my umpteenth CTscan.  For the first time in my nearly five-year cancer journey, its result was posted on my Patient’s Portal. I had been so used to seeing the same Stable, Stable, Stable that I read the report with great relish.  And then it hit me: The discussion was about mild progression!  What?! Has the beast risen from the scarred tissues? I read and re-read until the report convinced me it was indeed different from all the others of the past. On the bright side, there was no pleural (lung) nor pericardial (heart) effusion and all else – bone, liver, kidney, guts, lymphatic path –  were awesome.

I was expecting that afternoon a call from my twenty-something trial coordinator because she had promised to phone me and we’d make plans to case my new digs for a possible future party leading to a Pacific Ocean beach. Sure enough she phoned but only to tell me Dr Brevity wanted to see me the following week.

I had issues with the CTscan report coming to me directly when I never asked for it. In my five years as cancer patient and having gone through four university hospitals, the radiology report had always gone to the referring oncologist, who in turn reviewed the result with me as we analyzed the  images together. To deal with this upsetting report, I prepared  talking points for a serious presentation aimed at discarding that report.  I’d insist on a favorable report.  Yeppers.  Count me in as the type of candidate who’d receive only eight votes out of thousands and demand a recount.

At the consult, the Trial Coordinator and the RN stood at attention as Dr Brevity assured me the increase in size of my main nodule, the dormant flying saucer at the bottom of my left lung, is very tiny and does not meet the Response Evaluation Criteria in Solid Tumors (RECIST) for progression. He admitted he only wanted to hear my thoughts about what to do with it. Are you done talking? I asked. He said he was done talking.

I stepped up on my soapbox: I have issues with that report.  It must have gone to my Patient’s Portal by mistake.  It was probably intended for a reviewer. And I ranted on and on about how the report left much to be desired.  Everybody was so quiet, you could hear a pin drop.  As it turned out, what had gotten inadvertently into my Patient’s Portal was part of a very incomplete report. All my ardent speech rehearsal in skinny girl jeans and stilleto heels in front of a full-length mirror was for naught!

Dr Brevity stated that if in fact the beast had risen from the dead, he’d want to know the mechanism of the progression, as in, Did it mutate and if it did, what is the cancer mutation now? A biopsy would answer that question.  He followed up with another suggestion.  How about surgically removing that questionable mass of the lung?

Then came my turn to toss my two cents in.  I said, We went through this before. A radiologist, the one who I thought suspected me of having too much fun, had declared my main tumor “progressed.” We disagreed, challenged him, and took our case to the Supreme Court of Radiologists.  The radiologist who ends all radiologists consequently took our side, which obviously was right.  We have been stable since. Why don’t we ask the Grand Poobah again?

The trial coordinator answered swiftly:  You are no longer in a clinical trial.  Aaaah. Decisions had been made without my input.  It happens when awesomeness is all that one’s got.

So everybody momentarily backtracked from the not-so-sure problem.  It was resolved that I’d continue taking Poksceva.  At the next scheduled CTscan, we’ll eyeball dimensional changes, if any, of the one nodule that the Supreme Court of Radiologists had once proclaimed, It went stable a long time ago!

Meanwhile, I’ll mosey on down to my new kicks: the Laughter Yoga Club.  It’s good workout for the lungs of non-laughers and laughers like me who live alone and don’t get their quota. Yes, such an assembly exists and no one tells jokes there either.  Check it out.  Here’s one link: http://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=11&cad=rja&uact=8&ved=0ahUKEwjSmfePtuLPAhUG5WMKHYaZAbQQFghUMAo&url=http%3A%2F%2Flyinstitute.org%2F&usg=AFQjCNFa_Lx2wN1jz5n5ct03kCDk60ry9A&bvm=bv.135974163,d.cGc

My CO-1686 The Six-Minute Speech

Okay, folks! Let’s prepare for the water works. Get the tissues and handkerchiefs out. A tearjerker of a speech is just ahead.

First, for the speech writing class, here’s a small background. My handler emailed me the following outline for the speech:

You name and age

·         A brief sentence to share that Clovis support your travel – “Clovis Oncology supported my travel here today.”

·         A few sentences about yourself – your family, what you do for a living, connections with your community, etc. – all to give a picture of your life before your diagnosis

·         When you were diagnosed and your diagnosis – details you feel comfortable sharing about the severity of your diagnosis

·         A few sentences about what treatments you received prior to rociletinib and the success or failures of those treatments

·         Your experience with rociletinib and what adjustments and decisions you made with your physician – adjusting dose to manage glucose levels, any issues with rash but stayed on product as it was manageable

·         Your life since rociletinib – what you have returned to doing

·         Why you traveled to be at the meeting to share your story, what you want the committee to remember about your story as they consider their decision – e.g., The issue of resistance and need for additional therapies for patients with T790M mutation

I thought, OMG, how am I going to squeeze all that information in a written six-minute speech, actually shorter than that because I’d have to gasp for air after a comma, a longer gasp after a period?  That’s what my grade school teacher had drilled in my head. And since we’re talking about a senior babe whose age encompasses a huge chunk of a century, how will I condense an autobiography the size of War and Peace into a 4-1/2 minute piece of literature and still keep the essence of the story? Such a monumental task!  Enter the caped Inner Genius to whom nothing is insurmountable. Voila! The speech:

My name is Celia Ruiz Tomlinson. I am a 75-year-old lung cancer patient.

First of all, I thank the Board for allowing me to share my experience with lung cancer, and Clovis Oncology for making my trip possible.

I am a retired engineer/entrepreneur, a published author and a professional motivational speaker.

Growing up in a Manila slum awash with rotting trash and human waste, I transcended numbing poverty and became a civil engineer in the mid 1960’s when female engineers were unheard of. Buoyed by that success, I came to the United States in 1968 legally, alone with only $300 and my engineer’s diploma.  To my rude awakening, the American engineers confronted me with fierce resistance.  Through sheer tenacity, I gained acceptance.

In 1983 I founded an engineering company with $2000 from my own pocket. As its President and CEO, I grew the firm and received national entrepreneurial leadership awards. Twenty-five years later, in 2008, I sold the business and retired.

Four years into retirement, in the summer of 2012, I had a cough that didn’t seem to go away.  A visit to my doctor led to an image of a golf-ball-sized tumor at the bottom of my left lung and tiny nodules too many to count in both lungs.  Biopsy followed.  The diagnosis:  Non-small cell lung cancer, Stage Four. Prognosis:  8 months to live – a year at most.

True to character, I faced the dire prognosis with aplomb. But spunk alone can’t fight cancer. Drugs are needed.  At that time, FDA had just approved Tarceva for first-line treatment of my type of cancer.  My oncologist put me on Tarceva 150 milligrams daily.  No immediate side effects for one week.  On the eighth day, rash blanketed my face and chest.  The dosage was cut in half and the rash went away. After 100 days on Tarceva, the main tumor shrank 80%.  Subsequent CTscans showed stability.  My quality of life was good.

After 20 months on Tarceva, my oncologist suspected resistance and suggested that I participate in the rociletinib clinical trials.  Having qualified, I was accepted.

I took 1500 milligrams of rociletinib daily.  For four months, no side effects. My quality of life was great.  On the fifth month my blood sugar elevated. My oncologists and I worked with Metformin to control the hyperglycemia. Later we reduced the rociletinib dosage to 1000 milligrams.  One day I went on a 3-day drug vacation. When I resumed medication, the hyperglycemia mysteriously disappeared.

I have been on rociletinib now for two years, stable, with zero side effects the last twelve months. My awesome quality of life allows me to blog, inform and inspire other cancer patients.

Today is a far cry from that summer day of 2012 when the first oncologist sort of declared me “dead woman walking.” I implore the Board to please remember my story when deciding on the fate of rociletinib.  A cancer drug affects each patient differently.  It has been very good to me and other patients.  Therefore having more approved drugs is better than having less.

Thank you.

It was the quietest event in my platform speaking history. There was no laughter, no applause, nothing but the sound of my voice through the microphone and eerie silence.  It was a somber occasion, a plea for approval of a cancer drug.

Where’s the tearjerker? Just before blog post time, reliable sources informed me that the drug sponsor made a business decision to discontinue the pursuit of FDA approval of rociletinib, stop recruitment of participants for the trials, and focus its resources on the ongoing development of another more promising drug.  Rociletinib will never see commercialization. The cancer medicine brand “Poksceva” (that’s what my blog buddies and I named it!) will never be an option for non-small cell cancer patients with T790M mutation.

What about me?! I asked in horror. At this point, this is all about me. Your latest CTscans and blood work are still good. You’ll continue to be given the pills, my contact assured me. In other words, the program will be shut down through attrition. The pills contained in a silo somewhere in the Rockies are there for me.  Henceforth, it’s me and my CO-1686 against the world.  Okay, that’s just a touch of drama. I’m sure there are others out there in my situation.

Let’s conclude the post on an upbeat note. During the speech delivery, there were no stumbles. The word “rociletinib” tumbled from my lips perfectly enunciated at every mention, I toed the earnest line, and finished the speech under the allotted time.  The official timer, the noose man in the ceiling, never had a chance. A Blue Ribbon performance at Toastmasters Club! It’s time for a self-award.  Let me retrieve the calligraphy pen from the bequest box. Now, that definitely calls for a celebration.

Happy dance, Feisty Heifer!

 

 

My CO-1686: Progression is in the Eye of the Beholder

October 2015 is my 18th month of participation in the CO-1686 clinical trials. The drug has been good to me. I reciprocate by being as absolutely obedient as the ladies-in-waiting of Downton Abbey. I don’t cut the pills, ingest them on time religiously day after day, and take them with food as required. I swear, if the pills were peeps, they’d probably hurl themselves to form a pyramid, hoist me on the peak, and declare me their Beloved Most Fearless User. Wild fantasies warm the beating heart of a survivor!

After seventeen months in the trial, I woke up one morning not an ordinary senior babe but one transformed into a formidable expert on clinical trials. How scary! I better invoke the mother of all disclaimers here. I am not a healthcare professional. I am a retired professional engineer, a civil engineer, a design/build kinda guy like brother Noah of the Ark fame. In other words, nothing I say here should be taken as medical advice or to the bank.

A clinical trial is a Project of four entities: (1) the drug company, or Sponsor; (2) a teaching hospital, or University; (3) the government bureaucrats, or Oversight, and (4) “moi”, patient, Data Dame. Of course I’m just one of many anonymous participants throughout the free civilized world. Groups 1, 2, and 3 consist of doctors, oncologists, radiologists, researchers, technicians. Groups 1 and 2 process the data gathered from Group 4. Group 3 ramrods Groups 1, 2, and 4 to make sure they behave according to the approved protocols. Work with me here. It’ll get clearer.

At the onset of my participation, the Project drew blood samples for analysis, took a CTscan of the chest and abdomen, performed ECG, and did an MRI on my head. The purpose was to establish (a) baseline of numbers, (b) health issues in existence besides cancer, and (c) how many cancerous tumors are involved, and how they look. Then I started taking the trial drug. Henceforth, every three weeks, I floated into the clinic for blood tests and ECG again and again. The purpose each time was to compare the latest numbers with the baseline. Groups 1 and 2 wanted to know if the trial drug was punishing the kidneys, liver, and other organs. They wanted to know the drug’s effects on the blood cell counts, among other things. They should, after all, the drug had only been tested previously on animals. Every six weeks – then later every nine weeks – my chest and abdomen went through CTscans to determine if the cancer tumors shrank, grew, or stayed the same. If the tumors had gotten bigger, or new ones showed up, the Project would have kicked me out. Consequently, I would have sat on the curb seriously considering MMJ (medical marijuana) as my next line of treatment.

My main tumor’s CTscan results have shown slight measurement fluctuations, all falling under the baseline measurements. They could not always be the same because of the location of the tumor image cross-sections. Imagine slicing an orange. A slice towards the edge yields a small circle. A slice down the biggest part gives a bigger circle. No problem. But suddenly the last CTscan results stirred controversy. The pros of Groups 1 and 2 split into two factions. One faction claimed, “Data Dame is progressed!” In my suspicious mind, they are the ones who think I’m having too much fun. The dissenting faction countered, “Data Dame is not progressed!” And it went on. “Is too!” “Is not!” I wanted to cast my “Is-Not” vote but couldn’t. My many mystical powers don’t include breaking ties in clinical trials.

In search of support for their claim, one faction took the case to the Grand Guru of Radiologists, the radiologist to end all radiologists.

I did not know this guy exists! Is he the best in Club Med, the United States, or the whole world? Mere mention of his name folds the other radiologists on their knees, chanting. Okay, that’s exaggeration, but you get the drift. This dude is the Supreme Court of radiologists. He asked for, and received, all my CTscan images from the very first in my cancer journey through the same clinical trial across three western states to the last one at Club Med.

And what was his verdict? Envelop, please.

The Verdict: “This tumor went stable a long, long time ago.” Like I’ve had it since kindergarten! I can only hope he meant, “It’s already a scar tissue.” Hope springs eternal!

Data Dame aka Tiger X Kitten dodged the bullet.

So the Project cart continues to roll on with me on it, hanging tough. The Three Little Fellas, along with the too-many-to-count nodules, are still holding court in my chest. Plus, there are no guarantees on the “stable” main tumor. There are no guarantees in life, period. Cancer or no cancer.

On September 21, 2015 I did the three-week blood tests. Afterwards, Onc said about the results, “Good.” Brevity has grown on me.

And the beat goes on.

My CO-1686: A Re-Boot of Another Kind

My CO-1686 clinical trial’s three-week tests examine thirty eight (38) items in my blood including white and red corpuscle counts, cholesterol, liver and kidney enzymes, potassium, etc. etc. I keep hoping an item called “lineage” will be added to the list to help trial participants to uncover without the help of ancestry.com their DNA ties to queens and emperors. I personally would love to confirm my older sister’s claim that our royalty origins had recently been traced to the ancient King of Pirates of the Pacific high seas.

I’ve been taking the Clovis trial drug for 15 months now. Cups of my blood have been separated from me and analyzed in the laboratories. The analyses have always yielded good results except for the eight-month Clovis-induced hyperglycemia and the one-time low magnesium reading. Thankfully, both high glucose and low magnesium issues resolved. Otherwise with zero side effects, I have probably discussed with trial Oncs more non-cancer issues than cancer issues, including the now-resolved Metformin-caused total appetite loss and three urinary tract infection (UTI) events. The most recent non-cancer problem in the discussion block was overactive bladder.

What’s with this nasty overactive bladder anyway? Frequent urination, the symptom of overactive bladder, forced me to revisit my alma mater Google University and audit some courses. Overactive bladder, according to my professor Dr. Web, is a problem with bladder-storage function that causes a sudden urge to urinate. The urge may be difficult to stop, and overactive bladder may lead to the involuntary loss of urine, a malady also called incontinence, which means you can’t help but pee in your pants. Now THAT DEFINITELY got me shaking in my z-coil shoes!

Fortunately, the overactive bladder symptoms intensified a few days before my scheduled three-week visit at UCI. Awesome, I thought. I can challenge the Hot Shot Doc when he asks, “Do you have any problems?”

Flashback June 10, 2015 at UCI

After the initial brief exchange of pleasantries, Hot Shot Doc and Tiger X Kitten (that would be me) proceeded to the business at hand.

“Do you have any problems?” Doc asked, as expected.

“Nothing related to the Clovis trials,” I answered. “It’s probably an old age thing. I have been having this overactive bladder. I’m losing sleep over it.”

“Welcome to the club!” chimed one of the youngish nurses in the room. The fact that other people also suffer from overactive bladders grabbed my attention completely and utterly by surprise. It happens when the patient thinks the whole world revolves around her.

I wanted to do a filibuster to showcase my knowledge on overactive bladder but decided I better not after it dawned on me that I don’t call the shots in Club Med. The trial honchos could throw me out in a heartbeat. Or a nodule.

End of flashback.

Talk about responsiveness! The following day, I picked up the prescription drug Extended-Release Oxybutynin at Walgreens. Hot Shot Doc had given me the weapon to force my overactive bladder into submission. I’m loving this UCI trial site!

I studied the ER Oxybutynin literature. It treats overactive bladder.. blah..blah..blah. Among the side effects: dryness of the mouth, lessening of perspiration and urine, constipation, gas. I read up on other people’s opinion of the drug. For the most part, users praise it to high heavens. A few users curse its side effects. The drug manufacturer warned, “Do not cut these pills,” undoubtedly directed at me. Word gets around.

The time to take the drug came and in seven days the ER Oxybutynin pills were history. The effect on my problem was astonishing.

Before: without ER Oxybutynin: Frequent urination of normal amount

After: Change after 7 days of ingesting ER Oxybutynin: Frequent difficult urination of less amount, constipation, gas, dryness of the mouth

Unchanged: Number of squats!

Boy, howdy! I did what every red-blooded cancer survivor would do. I stopped taking ER Oxybutynin cold turkey. Within three days, my elimination system returned to normal: bladder not too active anymore. Supported by my medical degree from Google University, my opinion is that the constipation and gas had caused the bowels to knock around the overactive bladder, forcing it to re-learn its correct function. My body had re-booted! My bladder is fresh from rehab. The event reminds me of the induced hyperglycemia and (2000mg, then 1500mg) Metformin. After I had stopped all medication for three days, the glucose readings returned to normal, necessitating elimination of Metformin. Please be reminded of the mother of all disclaimers: Nothing in here is meant to offer medical advice. I am not a physician, nurse, or doula. What I am is a retired professional engineer, a civil engineer, whose main concern in my heyday was to make sure the drainage hole in the ground designed to collect flood water was not high and dry.

Is my body like a cellphone or what! When the cellphone suddenly refuses to budge, turn it off, remove the battery, put it back in, turn the phone on, and voila! There she goes again. Of course, everybody knows sooner or later that ol’ battery will conk out for good. And that’s another story, another day.

Related past post:
https://celpeggy.wordpress.com/2015/04/01/my-co-1686-year-two-opened-with-a-bang/

My CO-1686: A “Dear Celpeggy” Letter From Norway

One overcast day last month, while I was quietly meditating on my navel on the bedroom floor, a little voice told me to look at my blog on the smartphone perched on my lap. Sure enough there was a notice about a comment.

A gentleman named Lars in Norway wrote a comment at the end of my one-year anniversary blog post. What can be more Norwegian than the name Lars? It reminds me of Phyllis’ never-seen husband in the popular TV sitcom Mary Tyler Moore Show of the 70’s. But reader/writer Lars is a live one! His letter is complimentary and contains links to valuable information. I consider it a blog help that literally fell on my lap. It happens when the blogger is a self-professed amazing woman.

I am printing Lars’ letter here in its entirety because I am sure the links will be of interest to other followers of this blog. But first, I must confess that I entertained the notion of tossing a few superlative flattering adjectives in praise of Celpeggy in Lars’ letter but I decided against it. I remembered humility is a virtue. Second, please be reminded of the mother of all disclosures: My opinions expressed in this blog do not constitute medical advice. I am not a physician, nurse, midwife, dentist, medical technician or any health care professional. What I am is a retired professional engineer – a civil engineer – whose main focus during my productive years was ensuring that the water line was not connected to the sewer line. There you have it.

Here is Lars’ comment as is:

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Dear Celpeggy,

first of all: thanks for a very good and fun blog. My wife (who is from Singapore) was just diagnosed with same as you (stage 4 lung cancer) and reading your story both provides hope and laughter.

The reason I came across your blog was that I googled “metformin and erlotinib”. I have seen some research that indicates that metformin reduces both cancer risk and improves survival. Here is e.g. one article: http://www.ncbi.nlm.nih.gov/pubmed/25267165.

I have also seen an article that specifically looks at metformin in combination with erlotinib: http://www.ncbi.nlm.nih.gov/pubmed/24644001.

Would you have any thoughts on whether combining metformin with erlotinib could make sense? I am aware you have tried it in combination with CO-1686 which is not the same as erlotinib, but thought I might ask anyway 🙂

Again: thanks for a great blog and best whishes from Norway!

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I wrote him back:

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Hello Lars,

Pleased meeting you (and your wife) here although I must say a barbecue at the beach would have been a more pleasant venue.

The answer to your question is: I agree. Metformin and Erlotinib would be great together – Erlotinib as the treatment and Metformin a supplement. I wrote a post about Metformin twice. Please look at the archives, if you haven’t done so yet.

I loved your comment. It contains valuable information and links that other readers can appreciate. Unfortunately a majority of the followers do not read the comment area. Would you mind if I use part or all of your comment in a future post crediting you as the source? This way we can help other cancer sufferers and caregivers. Please let me know.

That’s a cute baby you have there. No young mother or father should ever have cancer. I hope your wife continues to do well on Tarceva but if not, there’s the CO-1686 which should soon be an approved second-generation lung cancer treatment.

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He responded:

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Hi Cella,

you can of course use any and all I write in future posts 😉 I found some more information I found regarding metformin. First of all two trials testing it out:

-metformin and gefitinib as first line treatment in China for patients with EGFR: https://clinicaltrials.gov/ct2/show/NCT01864681

-metformin and erlotinib as second line treatment for patients without EGFR: http://www.sciencedirect.com/science/article/pii/S1525730414001466

And one more study showing an increased survival for diabetes patients who use metformin and have lung cancer: http://www.ncbi.nlm.nih.gov/pubmed/25522257.

I am guessing the trial from China soon should have some results out, even though I am very far from being an expert on these issues… If you want, I can also send you the full articles from the above links.

And yes, it would have been much nicer to meet at a barbecue 😉 If you are ever in Norway, let me know and we should do a barbecue!

Best,

Lars

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In conclusion:

(a) Thank you, Lars, for sharing great links to information about future cancer treatments.

(b) Flying to Norway to enjoy a backyard barbecue suddenly became a distinct possibility for the social butterfly!

My CO-1686: Year Two Opened With a Bang!

My CO-1686 Clinical Trials One-Year Anniversary celebration rocked the whole month of March. The Inspire Party Bus rolled in twice. The rowdy riders sang and danced wildly, bottles of drink in hand. Unfortunately, I had to refuse their clamor for my pole dancing. Hey, I was a proper host who had to keep decorum. Speech! Speech! They chanted in unison as they banged the sides of the bus. I obliged. I bragged about my blog having been nominated for “A Lovely Blog Award” by fellow warriors/fun writers Dann Wonser http://www.dannwonser.com and Craig Blower https://craigblower.wordpress.com. A thunderous applause followed. Then at last the party ended. I bravely faced the must-do stuff: bags of trash to take out, chairs to stack, and a keg of beer to chug-a-lug.

No sooner had Year-One Celebration moved out to Memory Lane, did Year Two start with a bang. I had a UTI – urinary tract infection! It was my third UTI event since starting CO-1686 and my nth since time immemorial. This UTI is not related to cancer or CO-1686 but because I’ll refer to a previous post, I must share the story with those who give a damn.

UTI is common among women – a fact that hacks me off because I already paid my dues in society. I believe senior babes, especially those with lung cancer, should already be exempt from UTI, cold, and gas. But things have never been easy for me. It was just dumb luck that this recent UTI occurred days before my three-week blood-test schedule. It gave me ample opportunity to ask the Onc to include a urine test in the technician’s work order. Consequently, our visit included the urinalysis discussion.

“White blood cells are present in your urine,” announced the Onc, his voice dripping with concern.

“Uh-oh! We have an infection – a UTI,” I said nodding, enhancing my body language with an air of authority.

“Who is your primary care physician?”

“You are.” I flashed my modified Mona Lisa smile.

I love it when the Onc doesn’t argue with me. He said he will have the specimen cultured. “If the culture shows an infection,” he said, “I’ll phone in the antibiotic prescription to your pharmacist.”

I’ve seen urine culture reports. They show the cause of infection: virus, bacteria, or fungus. They show names of antibiotics that can eradicate the cause. They also provide names of antibiotics that are resistant to the culprit.

The culprit of the UTI under discussion now turned out to be e. coli – the same bacteria that hit national news when a bunch of Americans who had waddled from one end of salad bars to the other got deathly ill, resulting in the recall of a certain brand of organic spinach.

Some antibiotics have developed resistance. A big part of the blame, so I’ve read, is that as soon as some patients felt better after the second day of taking the antibiotic, they quit the week or so regimen. That would include me among those who made that adversarial contribution to the field of medicine. I’m hoping my selfless participation in the CO-1686 clinical trials will atone for our sins to mankind, you antibiotic regimen quitters you!

So my primary care physician by proclamation prescribed a seven-day regimen of a sulfa drug to fight the UTI. The last time I took sulfa drug was when I was a little girl living in squalor in Manila. It was the medicine of the day for any body part that ached – tooth, stomach, head. I figured this time, taking the pills one in the morning and one in the afternoon for seven days would be a breeze. Was I in for an unpleasant surprise! After the second day of ingesting the antibiotics, I felt like caca and it showed. It affected the other half of the population of the house. He missed the belly laugh. He suggested that I ask the doctor for a different antibiotic, but I told him it’s not in me to do that. I like to push myself and boasted that I was the recalcitrant kid who fought and beat seafood allergies. I said I could do seven days of feeling like caca. Easy.

I revisited Google University and audited courses on the modern-day sulfa antibiotic. I learned that this antibiotic’s modus operandi in fighting infection is by inhibiting the production of a certain body acid, which is too complicated to translate. One thing is clear: the human body is an awesome machine when in normal form. Remove a certain acid from it and a chemical imbalance happens to the human being.

I hung in there for the seven-day duration. Every day, I counted down…three more days…two..then one. The drug cleared up the infection but turned my system upside down. Eating became a challenge during the seven days and two days afterwards. My face dangled over the commode around meal times. My glucose numbers shot up. “Eat or perish!” my inner nutritionist admonished.

Medical marijuana to the rescue! My friend Goody Two Drops and I hadn’t said hello since December 23rd, 2014. It was time for a reunion. I retrieved Goody Two Drops from the refrigerator’s inner sanctum where it had sat with the anti-nausea cola syrup untouched for three months. I read the tincture dosing instructions again. The drops landed gently under my tongue. My head buzzed a little. In time my appetite roared back to life. Amazing stuff my buddy Goody Two Drops, which got me to thinking that horticulture, the science of cultivating a garden, orchard, or medicinal plants, might be a profitable hobby for me to pursue as my age careens towards one hundred.

At the end of the sulfa antibiotic seven-day regimen, I stopped taking all – I mean ALL medication – for three days. It was kind of a vacation, a wash-out for my body from the relentless assault of chemicals.

A week into Cycle 17 of my CO-1686, I noticed my blood glucose had mysteriously returned to normal. I had to stop Metformin. I guess the human body, like a computer, can be rebooted! I have no other explanation.

Bottom line:
(a) The UTI resolved.
(b) My blood glucose is normal again.
(c) 2000mg Metformin is out of my CO-1686 clinical trial regimen, unless high blood glucose returns as mysteriously as it had disappeared.
(d) The first blood tests of my CO-1686 Trial Year Two yielded satisfactory results.
(e) I feel great.
(f) Goody Two Drops is in hibernation again in the refrigerator for future reactivation if necessary.
(g) This Tarceva Diva alias Tiger X (as in Ex) Kitten, has been fortunate indeed. So far.

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 https://celpeggy.wordpress.com/2014/09/25/my-co-1686-metformin-front-and-center/ 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.