Nearly 8 Months on Tagrisso

On the evening of January 18th, 2017 I took my very first Tagrisso pill.  It had been 14 days after the CO-1686 boat unceremoniously abandoned me at sea. Captain Poksceva aka rociletinib refused to play with me any more.  It was okay with me.  It’s the attitude I take when bawling and squalling are not an option.  I square my shoulders, primp my growing platinum blond hair, and sashay forward.

Now it’s August and I realize getting on the roaring Tagrisso train after progression on Poksceva was a good third act after Tarceva and Poksceva.  My last CTscan which was done in April this year, showed Tagrisso had devoured 80% of the tumor.  The shrinkage calculation used simple mathematical proportions. The cancer medical professionals probably have a more sophisticated discombobulating method of computing the shrinkage of the nasty main tumor at the bottom of the lower lobe of my left lung, but who cares?  Shrinkage is shrinkage in any language.

Let’s look back at the distant past a little.

I have been around the shrinkage bend a couple of times.  The first time was five years ago after 100 days (3 months 10 days) on Tarceva.  It was the same thing.  Tarceva gobbled 80% of the tumor right off the bat, leaving 20% to hang around my lung.  For the next 17 months the CTscan image every three months showed the same 20%.  The good Onc, one exchange Irish doctor, and myself hoped it was only scar tissue.  There was really no CTscan image afterwards that showed the 20 percenter increased in size, but the world-class Onc got a wild-haired notion to make fine-toothed-comb analysis of my lung images. After careful and thorough eyeballing of old and new images,  he noticed three tiny nodules that weren’t there before.  It was an Aha! moment for him.  I forgot what kind of moment it was for me but it would be safe to say it was a hacked-off moment. Henceforth he referred to the three tiny discoveries as little fellas that confirmed his suspicion of a progression.

Nearly 3 years of CTscan images under the CO-1686 trial showed the same 20 percenter. Nothing grew nothing new.  Not a word on the little fellas. I imagine they are still there among the tiny nodules too many to count in both of my lungs. They may be cancerous, maybe not.  No one knows what they are.  What matters is that they are not giving me anything –  no pains, no shortness of breath, no coughs, no loss of appetite.  Maybe they are like freckles on a redhead kid’s face. They are just there.

Back to the present…

Then the 20 percenter showed progression in spite of the CO-1686 drug.  The clinical trial folks, with whom I developed a good relationship, had to transfer my care to a one-man-band onc whom I named Dr Smiley.

Dr Smiley examined me the other day 4 months after the last scan.  He jammed his bare hand in my armpits to feel swollen lymph nodes.  He found none. He felt dampness instead.  Walking in the hot sun even under an umbrella drenched me. He kneaded my neck to feel swollen lymph nodes.  He discovered none.  He noticed instead hidden on a fold on my neck the faint seam of my long-ago parathyroid surgery. He looked for swollen feet and ankles. Nothing there.  He was dictating his findings to a young techie girl.  He listened to my lungs and said, There is a velcro sound from the left lung.  I said, Whoa! What is the velcro doing in my left lung?  He answered, That’s probably where your cancer was. I liked the past tense.

Dr Smiley concluded the visit by announcing that he will not order a CTscan this time because the images and report from the last one are fantastic, my present vitals are great, and I have no unexplained weight loss, pain, shortness of breath, coughs, and other symptoms.  He set the next appointment: November 28th, bloods and CTscan.  That would put me on the every-six-months schedule.

I am not complaining.  He seems to know what he’s doing.

 

 

 

 

 

 

 

 

Insurance Company Denies Payment

Not a Pretty Picture!

 

My life is filled with conflict.  Fortunately, I dig conflict.  Being a self-proclaimed Drama Queen, I thrive on conflict.  Conflict becomes me.  Okay, you get the drift.

When it became almost clear that rociletinib, the CO-1686 trial drug aka poksceva, had started to differ with me as to its purpose in my well-being, my awesome Onc, Dr Brevity, decided to requisition the services of Guardant.  Guardant is the noted high-tech company that analyzes human blood to determine the types of mutated cells that are coursing through the veins of a cancer patient.  Dr Brevity said he wanted to know what happened to the cancer cell that was once identified as T795, a mutation developed out of my EGFR in exon 19 deletion to resist Tarceva.  Cancer cells do learn to outsmart cancer drugs!

I asked for the results of Guardant’s lab analysis as soon as it became available.  Like the Good Doctor, I wanted to know what new nasties were parading in my system.

I read the report with great interest.  The only problem was, I did not understand a thing about analysis of DNA, genes, and molecular pathology.  Well, what do I know about molecular pathology? I’m a civil engineer; I’m into sewers.  But I got the hang of what the report was saying: Those analysts did not know what to make of the results either because there was not enough material in my blood, consequently, they did not know what treatment to recommend.  So, now, a whole slew of us including Dr Brevity, the analysts, the CO-1686 trial sponsor, its employees and associates, and me, know more than what we did before Guardant came into my existence.  Zip, zero, nada.  And my insurance company put me and only me on notice that they will not pay for the lab’s analytical services.  In other words, you, Ms Senior String-Bikini Babe, shall pay.  The scenario reeks with conflict of interest!  The insurance company’s interest in my funds conflicts with my interest in not paying for anything whenever possible.

Well, I happen to be a veteran of conflicts.  In public events, when the emcee asks veterans in the audience to stand up and be recognized for their patriotic service to the country, I attempt to join those who rise, but a companion always pulls me down and puts me in my place.

I read the letter of the insurance company word for word and found I have 60 days to file an appeal.  I can name a relative, friend, attorney, doctor, or someone else to act as my representative.  The most logical representative is Dr Brevity because he was the reason for the payment denial, which, by the way, was given:  Medical records requested were not received.  In order to determine financial liability or medical necessity medical records are required to assist in a clinical determination. As these records have not been received, this claim is not payable by the insurance company.

It was my turn to put somebody else on notice.  And I did.  Voila!

(to be continued) 

I’d be glad to hear your experience if you have any on insurance payment denial of Guardant’s services.

 

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 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!