CT Scans After 11 Months on Tagrisso

Okay, no photos for this post, just milestone dates:

December 8, 2017  CT Scans day

May 5, 2017  Last previous CT Scan day

January 15, 2017   Swallowed first 80mg Tagrisso pill

Whoa.  That’s seven (7) months between scans! Was I apprehensive on December 8, 2017? Nope.  I was more concerned that my cabbie might not show up in time or at all. I don’t believe taxi drivers will show up until they show up.

Non-emergency medical cab rides are subsidized by my city in California.  I like it.  The $45 round-trip costs me $8 plus a small tip dictated by my mood and the driver’s attitude.  The subsidy has nothing to do with the resident’s financial status.  The city simply loves its adorable seniors.  Had I known about the subsidy sooner, I would have not gotten lost looking for doctor’s offices using the public transportation system. It always happens to the new kid in town.  But hey! I learned something new in each of those bad-hair sweaty days plus they provided fodder for my blog.  Always looking at the bright side!

My one-man-band Onc, Dr Smiley, does things differently from the Oncs in teaching hospitals.  First he orders the blood tests then we do a face-to-face talk to discuss the results.  This time, he said all the readings were fine except my liver enzymes were high.  What could that be, I asked.  It could be an infection, it could be cancer, he said.  What! I’ve had those high liver enzymes before and they were caused by neither infection nor cancer.  I remember returning to my alma mater Google University to find out more about AST’s and ALT’s and I came up with all things that were music to my ears. I wanted to tell him that but I didn’t.  I simply smiled to match the built-in smile on his face.  Then he scheduled my chest and abdomen CT Scans at a hospital with which his practice connects.

This hospital does things differently too.  They had me drink this chalky barium concoction over a two-hour period prior to the CT Scans. Then came the CT Scan motions.

The scans took place on a Friday.  The following Monday morning a message from Dr Smiley lit my smart phone, which is always on Mute so that I’ll miss all calls and appear important.  The results must be in, I presumed.  The phone also indicated there was a text message from my son.  I checked that one first.  Priorities.  In response to my text, he said he had used two kinds of sauces on the fried tofu that he served me in his house the day before Thanksgiving.  I fought the feeling of perpetuating the culinary arts conversation.  I had to move on to listen to Dr Smiley’s voice message.

The message actually came through the female secretary’s voice.  Everything is fine, she said. The chest is good, the abdomen is good.  The tiny nodules too many to count still showed up in both lungs but they are stable.  If you have any questions, give me a call.  I thought, here we go again.  The nameless dots in my lungs aren’t going nowhere.  In my mind I declared them scar tissues.

Here’s another thing that the good doctor does differently: No face-to-face meeting to discuss good scans results.  I find that strange, but holy guacamole, good news is good news which ever way it is shared.

 

 

 

The Colonoscopy

20171110_211046.png
The Colon: Everybody Has One

In a span of six months I saw two gastroenterologists (GE).  Nothing was wrong with me.  I had no symptoms.  It was just that my doctors kept referring me to other doctors and I did not argue because I’m retired.  I need to supplement my recreational activities with educational ones.

My oncologist (Onc) referred me to the first GE, whom I never met.  His registered nurse interviewed me and concluded that nothing should be done to me but her boss the GE always made the final decision on the matter.  Sure enough he said nothing should be done to me.  Onc was happy but my Primary Care Physician (PCP) was not. He referred me to the second GE and told me for the nth time me I should get a colonoscopy because of my cancer history.  I finally caved in and agreed.

So off to GE#2 I shuffled.  My insurance company gladly notified me of their approval of PCP’s request: a 30-minute face-to-face interview between GE#2 and me.

GE#2 is another one of those young, suntanned and handsome Southern Orange County physicians to whom I’ve grown accustomed.  He definitely descended from one of the failed Hollywood star wannabes of Bugsy’s era.

He had 30 minutes so he went straight to business and asked me what symptoms I had that brought me to him. I told the truth: no symptoms. He gave me two options. Option number 1 screening, which is usually given to people with no symptoms. It would require checking of the stool by PCP through lab test results. Option number 2 diagnostic colonoscopy entails him sending a camera through the rear-end orifice and analyzing every nook and cranny of my large intestine, also called the colon. A camera? I asked, with feigned terror in my eyes. How big is this camera you’re talking about? He chuckled and clarified: It’s tiny and you’ll be under anesthesia.  You will not know what’s happening and it will take only about 45 minutes. I’ll look for polyps or cancer signs. If I see polyps, I’ll remove them there and then. I said, I have no symptoms, I’ll take Option 1. What happens next? His response: Your PCP will just keep telling you to have Colonoscopy.

I decided to cut out the PCP agony and go for the colonoscopy experience or Option 2.

GE#2’s battery of assistants went to work.  The tech scheduled a date for my colonoscopy procedure to be performed as an outpatient in a facility where mostly elderly men and women allow the gastroenterologist surgeon  to insert this tiny camera in the rear end for a scenic tour of the large intestine.  It would be like a small train entering a dark tunnel that has 4 bends, each one almost 90 degrees, forming an open square. The camera takes photographs at points chosen by GE. But first, the patient’s large intestine must go through a thorough cleansing to get rid of any caca that might block the camera and a clear view of whatever adorns the innards.

The nurse gave me a page long of must-do things: buy 32-oz bottle of gatorade and a bottle of a laxative; mix the two fluids; take three laxative tablets two different times; drink the gatorade mixture along with a liquid diet at certain times all day before the day of the procedure and hours just before the actual colonoscopy.

All told, I dedicated 3 days of my leisurely life for the project.  Day 1 for shopping, Day 2 for cleansing, Day 3 for the colonoscopy.  Retirement is awesome.  It allows time for this kind of experience.  I was not even thinking of results, bad or good.

Day 2 was the toughest, definitely not a time to visit Disneyland. I had to stay home, prepared to plant myself on the commode at all times.  Laxative overload owned me!

Day 3 proved to be anti-climactic.  I was told to lie down sideways on the gurney and relax.  A nurse installed an Intra-Vein line in front of my elbow and inserted an oxygen thingy in my nose.  Next thing I knew I was waking up.  Okay!  Chop, chop.  I joyfully exclaimed.  Are we ever going to start the colonoscopy?  The head nurse responded, All done.  You’ve been asleep for 2-1/2 hours.  I was stunned.  I had no pain anywhere, no bleeding, no discomfort, nothing.  Whoa! I could have dropped dead and entered the pearly gates without any knowledge of colonoscopy.  I missed out on the event totally.

Everything went well, the handsome devil Dr GE#2 assured me and handed me a sheet of photographs of certain scenic spots inside my large intestine.  I studied each ghastly image with mixed disgust and curiosity.  They looked kind of gross, really, but the pictures of the inside of my colon brought good news: no polyps, no cancer signs.

The clinic’s post-colonoscopy written instructions were pretty serious: No walking home, no bus, no taxi.  Someone must drive the patient home and the driver must be physically presented during the check in otherwise the procedure will be cancelled.  Good for them but I had my own agenda.  I convinced a male friend to accompany me and pretend to be my driver.  I wanted to go home by myself.

After an hour of my coming to, the staff noticed that no one with car keys had arrived  for me.  They became suspicious.  They wheeled me to a corner of the recovery room and held me hostage.  No car, no release.   While buying time for the anesthesia to wear off,  I stared at the door and the exit sign.  They beckoned me.  But the nurses could read the glitter of excitement of escape in my eyes.  They took turns talking to me, still hoping someone would show up with car keys.  Finally, they gave up.  The head nurse instructed a young man to drive me home and walk me to the door of my manor.

Don’t we just love happy endings?  Happy dance, senior string-bikini babe!

 

 

 

 

 

 

 

Insurance Company Denies Payment

20170625_081140_0011.jpg
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.

 

HealthWell Foundation Ran Out of Funds (conclusion)

20170609_083123_008[1]

Okay, so the Onc’s RN said all I needed to do was drop by their office and sign the document and she’d FAX it right back to Astra Zeneca (AZ), manufacturer of Tagrisso. It sounded so easy. But as it turned out, my “drop by” would be fraught with difficulties, most of them my own doing.  Difficulties are good. They sure make my accomplishment seem more epic.

True to my minimalist lifestyle, I have been without vehicle now for 10 months. I’ve mastered the retirement resort community’s bus system. I took my maiden solo 15-minute trip to Laguna Beach using the Orange County Transportation Authority (OCTA) bus and it worked. I found the way back to my manor on the same day! Buoyed by my initial success, I decided to use OCTA to drop by the Onc’s office, which is in another city. The other option was by taxi. The big difference in the cost of the round trip drop-by: $50 by cab vs $1.50 by 24-hour OCTA bus pass.  I could definitely use the savings to buy me a new string bikini swimsuit.  Priorities, priorities.

I planned the trip.  Actually the OCTA website did the planning complete with maps and instructions.  I packed cut-up apples, cashews, and cheese cubes for snack in case my blood glucose ran low while I was in the middle of nowhere. And of course water. All set with my roommate the backpack carrying the goodies, off we went to the expedition.

It seemed like I was hopelessly lost. I did a lot – and I mean A LOT – of walking to correct my navigation errors.  Finally I made it to the Onc’s office, signed the paper, and headed for the bus to go home. Got lost some more. If I straightened out the path that I had walked, I probably would have reached Canada. But it was so worth the experience and the mission accomplished.  Always in awe of the bright side – that’s me.

The following day, AZ phoned and let me know the application FAXed from my Onc’s office was incomplete. Oh no! Over the phone she and I completed it. The next day, she phoned me again this time for the good news: I am officially in the co-pay assistance program: no need to wait for the IRS document, no need to file my application, no need to call for my refills which AZ – not the specialty pharmacy – will ship directly.  How awesome is that! As I wrote this post, I had exactly 5 Tagrisso pills left. The shipment was supposed to arrive any day.

Saved by the bell!

Please feel free to share your drug co-pay story, if you have any.

 

 

 

 

 

Then HealthWell Foundation Ran Out of Funds for my Tagrisso Co-Pay

I never thought cancer drug crisis would be knocking on my door. In my five-year journey, everything had been rosy. I received charitable foundation funding for Tarceva straight away, got admitted in a clinical trial on first attempt, and was offered another foundation funding for Tagrisso without any effort on my part. Awesome things just kept falling on my lap.

Then crisis struck. I had just completed my fourth month on Tagrisso and called the pharmacy for the fifth month refill when the boom fell. We have a problem, said the specialty pharmacy employee (SP) over the phone. She continued, The HealthWell Foundation ran out of money to help you with your co-pay.

What? I recently recently donated to the HealthWell fund-raising campaign. Obviously the campaign did not raise enough money.  My pittance of a donation did not  not make a difference.

I asked SP, Will you ship my Tagrisso pills without receiving payment first?  I promise to pay as soon as I decide which bank provides the most conducive robbery escape route.  Of course not, she said.  You need to pay $101.85 in advance to cover your co-pay for the month supply.  The amount shocked me.  I could have used that to pay my smartphone bill.  I got to thinking, How much would it have been if HealthWell totally did not contribute? I asked SP.  She replied, $653.24 for a month’s supply.  My shock increased sixfold! I immediately paid the lower amount just in case the worse has yet to come.  UPS delivered Tagrisso pills to my home two days later.

To give me hope for the immediate future, SP told me she got financial assistance request forms from Astra Zeneca (AZ), the manufacturer of Tagrisso.  She gave the forms directly to my Onc.  He had to fill out a part and I had to do the rest.  To complete my portion, I had to request documents from the IRS to prove that I did not have to file income tax returns for 2016, the year my husband Octo died.  I qualified for filing exemption as a newly-widowed taxpayer.  According to the IRS website, most requests take 10 days processing time.

With exactly 13 pills left (of the 30 pills for which I had sprung $101.85) and a ten-day wait for the IRS response,  the co-pay subsidy situation seemed bleak.  Where would I get $7,800 a year for my co-pay?  I twiddled my thumbs then glanced at the mirror to see how my hair, which I’m letting grow longer, looked.

I kept wishing the IRS would reply faster so I could put its document in the envelop along with my financial assistance application and mail it to AZ before my Tagrisso supply dwindled to zero.

Then suddenly, out of the blue, my Onc Dr Smiley’s RN phoned and told me Dr Smiley received authorization to prescribe Tagrisso for me.  AZ will fill it for free! She added, All you need to do is drop by and sign a document.  I will fax it back to AZ immediately.

What?!!  Is another awesome thing fixing to fall on my lap?

I will keep you posted of the developments.  I have a very few Tagrisso pills left.

Do you have a similar situation? Let’s talk about it.

20170430_082035.jpg

The Author,  Celia Ruiz Tomlinson, just figured out how to do a caption. Hah!

 

 

 

 

 

 

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.

Swollen Feet and Ankles

Nowadays, each time I notice any little unwelcome change in my body, my finger is ready to point to cancer and anything related to it as the culprit.  One day last January, I noticed my feet and ankles were swollen, a mysterious condition that I had never experienced before. Having survived many mysterious ailments decades after surviving statutory age, I put swollen feet and ankles in the blame game department. Right off the bat,  I wanted to declare the swelling as a side effect of the Tagrisso pills but I couldn’t.  They hadn’t been shipped to me yet at that time!

As usual, I did my sleuthing. How did that happen? How could I suddenly have swollen feet and ankles? I thought only pregnant women got them. Or women from third-world countries that still have the disease called beriberi. Even when I was pregnant I never had swollen feet and ankles, but my breasts became swollen with milk for the infant right after childbirth. Those I liked because they made me look voluptuous overnight.

I consulted my RN friend in Albuquerque.  Over the phone she gave me a mini-course on swollen feet and ankles based on her education and experience. After the session, you’d think I would have been satisfied and put the issue to rest.  Oh no, not me. I’m an engineer.  I have the need to know.  Why do feet and ankles swell?  To find out, I returned to Google University (GU) and audited the course Swollen Ankles 101.

I searched GU only for what applied to my case. After all it’s all about me, which takes me back to the mother of all disclosures: I am not giving medical advice here. Remember I am a retired civil engineer who at the peak of relevance was only concerned about sewage flowing downhill. And it usually did, and still does, unless someone pumped it out of a place where it is not moving and hauled it somewhere where it can do its thing – flow downhill.

  1. Consumption of too much sodium causes feet and ankles to swell. After reading that statement, the light bulb over my head went like the flashing light on a police car. It made sense! My episode of swollen feet and ankles had immediately followed my bacterial lung infection event. During the coughing disturbance, I needed lots of liquids – water, tea, beer, soups – to help get rid of the mucus from my body.  I toyed with the notion of concocting from scratch the hearty chicken soup that everybody and his brother swear as sure cure for cough and cold but I couldn’t. There was not one dead chicken in the freezer.  The bed also beckoned me to loll. I resorted to canned soups, which had never been part of my eating regimen. For some reason, the canned soups tasted yummy those days, especially Trader Joe’s clam chowder. Its label on the can said, three (3) servings per can. No way, I argued with the label, One serving per can! And I ate the soup to my heart’s content over and over. During the sleuthing process, I re-read the label on the can.  It says one serving contains 800 milligrams (mg) of sodium.  Did the math: 3 servings in one sitting equal 2400 mg of salt. According to the Dietary Guidelines, persons 55 and older should not consume over 1500 mg of sodium per day. Conclusion: I ate waaaaay too much salt over a period of 21 days. No wonder my feet morphed into fat burritos.
  2. To treat swollen feet and ankles, elevation is the key.  Site after site in GU assured me that swollen ankles and feet are common and usually not cause for concern, unless accompanied by pain in other parts of the body or other symptoms that could signal a serious health issue.  No other malady symptoms accompanied my swollen feet and ankles.  After reading the encouraging paragraph, I wanted to do cartwheels to celebrate but I couldn’t.  My feet and ankles weighed like lead.  The theory behind the swelling of feet and ankles is simple and makes sense. Sodium is an element that plays a key role in regulating water in the cells of the human body, among other functions. Excess sodium makes the body hold extra fluids in the cells. Like the sewage in the sewer pipe, the water in the cells flows downhill. Gravity takes the excess water to the feet and ankles. There I had it!  To get rid of the swelling, I needed the help of gravity to return the water back to circulation. But how much more downhill can it be if downhill starts from the head then down to toes?  Solution: elevation!  I got a pillow and put it on top of the dining table. I sat on my favorite chair and propped my feet on the ingenious engineering contraption. My feet were higher than my waist.  I elevated my feet and ankles for 20 minutes every hour that day.  Okay. I must confess. My consultant and GU did plant the elevation idea in my head but I worked out the specs and details of the contraption. Bottom line: Elimination of sodium and elevation of the feet resolved the swelling issue after a few days.

Although I’ve been careful with my sodium intake and generally staying in my good behavior, my ankles still swell occasionally. Minor swelling. It’s a good thing I’m not into ankle bracelets. What I do when the swelling happens is I review the day’s immediate past activities and try to figure out what triggered it. I find that too much walking or prolonged sitting or standing causes it. Who knows! But surely, one thing happens when I elevate those feet up a few times for 20 minutes each time: The fluids mosey on back to circulation and allow the ankles to look sexy again…to a certain segment of the population. So I read.