What a difference 3.5 years make for Tarceva users! I was cataloguing my blog posts, carefully reading each of them, and searching for timeless information beneficial to new Tarceva users when one particular post stood out. It’s in the Tarceva Divas and Dudes blog. The update post title was Tarceva Divas and Dudes 03/28/2014 (The Update).
The Update stood out because:
(a) It reflected the evolution of Tarceva users. I noticed that in 3.5 years, many users have moved on to other treatments, some have abandoned Tarceva in favor of clinical trials or approved clinical trial drugs, and a few moved on for good. Moving on for good is something all of us – with or without cancer – will do sooner or later, preferably later, because that’s what we finite beings do.
(b) It generated 125 comments, making the thread 7 pages long. A few comments even took on lives of their own.
(c) It was chock full of relevant information, including a first-hand blow-by-blow account of a biopsy and answers to often-asked questions like Why go on a clinical trial, What time do you take your Tarceva?
(d) It reflected the history of the Tarceva Divas and Dudes blog.
(e) It shows how the author evolved into an awesome amazing woman. Ooops, sorry! I just had this crying need to throw that in the mix.
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.
I remember the arrival of the 10,000th view of my blog. It got me so excited that I updated the blog with a post about the 10,000th read. Now that I have published a total of 88 posts as of today, I realize I was blissfully amateurish then, especially after someone recently asked me if the blog was getting 1000 views a day! But I had a great time being an honest newbie blogger.
There’s beauty in honesty. I remember when our high school newspaper adviser selected me, a mere columnist/reporter, to be an alternate delegate in the event one of our school’s seven editors could not join the delegation that would sail to a national secondary schools press conference in the southern Philippines. The prospect of being on a boat bigger than a canoe for three days on the Philippine Sea – something I had never experienced – excited me endlessly.
As instructed I packed for the trip. It was pretty cruel, really, to order me to pack to go nowhere unless one editor became ill. I wanted to go so bad I could taste it but I did not want anybody to get sick. Why did my 16-year-old life have to be so complicated? So on the delegation’s departure day, there I sat in the house, waiting for word on my fate as a future awesome journalist.
Oh dear. As fate would have it, the flu bug sickened the society editor. Consequently I was notified of my life’s purpose that week! My parents rushed me in a public jeepney to the port to board the boat at the last minute. My school’s healthy editors’ dim view of my sudden appearance on the scene was palpable.
I was like a Beverly Hillbilly on the boat. After all, I had never been on one, never been in any other island on the map, never been a delegate – a total hick from the sticks. My mouth was probably agape all the time in silent wonderment. Everything amazed me – the aging boat, the measly food, the cots for us to sleep on, the help, the diversity of passengers, the balmy sea breeze, and myself. I was in total disbelief of my presence there!
At the conference, competitions were held among us budding writers from high schools all over the Philippines. Our adviser entered me in a feature writing event. I wrote with unabashed honesty about my awe of the three-day boat journey. Perhaps the judges found unsophistication, naivete, and honesty so refreshing that they awarded me a bronze medal. Hey, that was third prize – after gold and silver! Correct spelling and grammar probably did not hurt either.
Okay, where was I on the blog stats? I honestly got sidetracked.
According to the blog site statistics that readers don’t see, five (5) posts stand out as the most viewed out of 88 posts over 40 months. Who knows who the readers are, but it would be safe to say they are mostly cancer patients and caregivers looking for answers. The rest are lurkers and cancer drug investors. The response exceeded my expectation. I had only decided to blog to inform family and friends about my ongoing fight against the malignant tumor at the bottom of my left lung and the unknown tiny spots too many to count scattered throughout both lungs. By so doing, I could avoid repeating my answer to the persistent question: How are you doing?
The statistics tell a story. I have my own take, too, on why the 5 blog posts attract the most all time viewers. Like all the other posts that did not make the top 5, they are written in humor. They can be found in the archives.
Following are the top 5 and why:
No. 5 About Celpeggy
Readers want to know who is this blogger? What does she know? What makes her tick? How can she write in such a style? What’s her problem?
No. 4 Cancer Diagnosis is not a Death Sentence
Don’t we all look for hope and reassurance that we are facing a situation that is not insurmountable!
No. 3 My CO-1686 Stoke that Appetite!
Loss of appetite is universal. Based on experience, this medical marijuana account is very honest and extreme honesty can bring about hilarity. A caregiver, a Hollywood comedy writer, told me after reading it, You are a very funny girl. You’d think she saw me in a string bikini.
No. 2 Tarceva Resistance – When It’s Time to Move On
Sooner or later, cancer cells outsmart the drug that’s targeting them. Newly diagnosed patients and their caregivers want to keep one step ahead. We’ll revisit this topic. It could have been done better.
No. 1 CO-1686 First Scan CO-1686 Vs Diva’s Lung Cancer
This is a one off. June 4, 2014. One investor in the CO-1686 drug was following my blog. When my first CTscan after six weeks of Poksceva (my tongue-in-cheek brand for Rociletinib) showed great promise as the drug for the T790M mutation of EGFR, he twitted and his tweet went viral in the investment community, sending my stats completely out of the chart. Unfortunately, the CO-1686 trial was eventually discontinued. I don’t know if the investors lost money, but that’s not my problem.
Thank you for your support and patronage. We are meant for each other. Which topic would you like to revisit?
Cancer’s only redeeming value is that it comes in handy for blaming anything that goes haywire. I have blamed cancer for everything from aging to zhingles. I know, but shingles spelled correctly won’t cover the whole alphabet spectrum.
My most recent addition to the blame-cancer game is a lump on my left arm near the shoulder. I noticed it one day while soaking in my five-minute vitamin D quota from the toasty Southern California sun while seating on the only patio chair in front of my privacy-walled minimalist manor. At first I stared admiringly at the lump, delighted that I was getting some muscle definition. But when I looked at the same area on my right arm and saw nothing there to balance it, the lump raised my suspicion. I didn’t think it suddenly appeared but I didn’t know how long the lump has been there. I had been too busy taking selfies.
I immediately blamed cancer, returned to my alma mater, Google University (GU) and revisited my mentor, the founder himself, Dr Google. I asked about “lump in my left arm near the shoulder.” Sure enough, other alumni had already inquired about it. How dare them debunk the myth that the Senior String-Bikini Babe is an original!
Dr Google had a few things to say about the lump. Its location, appearance and texture based on what I saw and felt, describe LIPOMA, a slow growing usually harmless, painless fatty lump that is most often situated between the skin and the muscle layer and located in the neck, shoulders, arms, and other areas that did not matter anymore after reading the shoulders and arms. Any one can get Lipoma at any age. It requires medical diagnosis because the lump may be LIPOSARCOMA, which looks similar but is bad news. I threw some more questions. Dr Google’s answer: Enough already! Stop self-diagnosis. See your doctor.
Grudgingly, I contacted my Primary Care Physician (PCP), a gerontologist who makes a living looking for as much wrong as he can find in me. Of course he has his RN for his first line of defense. I described to her my GU findings. She said she would ask PCP. After conferring with him, she connected me with a surgeon, another young handsome Southern Orange County doctor.
Three days later, I faced the good doctor, Dr Han Sahm. The name sounds fictitious because it is, to protect his privacy. Obviously he had already heard from RN everything about the lump. He jabbed the lump with his forefinger, pushed it around and declared it 99.99999% not cancer. I said, So there is that 0.00001% it is cancer. He said, I have operated on thousands of this over five years and the results have been 100%. You have two options: (1) Remove it, or (2) Do nothing but watch it for some time and if it starts to bother you, we’ll remove it. It will take only minutes. My decision came swiftly: Let’s wait until it becomes the size of a cantaloupe then do the liposuction. He laughed, We don’t want to wait that long. We want the procedure to last only minutes.
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.
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.
The Author, Celia Ruiz Tomlinson, just figured out how to do a caption. Hah!
Being with the One-Man-Band Onc also known as Team Smiley, I did not know exactly what to expect. But with all my CT Scan experience at 4 university hospitals, I figured, there would be the 4-hour fast before the CT Scan procedure, which normally takes 5 to 8 minutes. I had been told to report at the hospital at 9:30 a.m. for processing. I surmised if the CT Scan started at 11:30 a.m. I should be out of the hospital by 11:45 a.m.
Surprise! Right after completing the insurance paperwork at 10:45 a.m., a twentysomething female nurse assistant escorted me to the Radiology department. A male technician, 30’s, in hospital blues, led me to a tiny room separated from the rest of the world by a colorful curtain and handed me two bottles of barium berry-flavored drink. He said, Start drinking the first bottle at 11:00 a.m. Drink it over a 30-minute period, which means ending the drinking at 11:30. Take a 30-minute break, then start the second bottle. Drink it slowly for 30 minutes, or until 12:00 noon.
I did everything according to the instructions. After drinking all the berry-flavored yuck, I went outside the curtain to turn over the empty bottles and hopefully get started with the CT Scan. There was not one soul in the room. I had been abandoned! With the two empty bottles in my hands, I paced the floor frantically, like a wino needing her fix badly. Finally, a tall Anglo man, wearing a hospital mask, entered the room. He asked, Can I help you? I answered, What do I do with these empty bottles? I’m done and ready for the CT Scan. He said, Put them in the trash can. I asked how about the scan? He replied, Someone will get you. Sure enough at 12:30 p.m., the technician in hospital blues reappeared. He led me to the CT scan room and worked the CT Scan machine.
CT Scan is CT Scan in any hospital. I have already memorized the instructions: Take a normal breath, hold……….Carry on with your breathing. I am always happy to hear that I have the permission to breathe again.
May 8, 2017 Result Day
Dr Smiley’s Registered Nurse left a message on my smartphone, giving the result of the CT Scan, and telling me to call her if I had any questions. I returned her call. At first, she could not remember who I was because she had made many calls to various patients. I asked her questions to which her answers were, I don’t know. Finally I asked her, Is the information in the Patient’s Portal? Her answer: I don’t know.
The information is in fact in the Patient’s Portal. Here it goes:
The latest CT Scan images were compared to those of January 2017, done at UCI.
Lungs: Overall improved relative to the January 2017 images. The main pulmonary nodule, the “flying saucer” at the lower left lobe, was 4 mm x 9 mm, reduced from 7 mm x 25 mm. No new or enlarging nodules.
Tagrisso came through for the Tagrisso Tiger! That’s the new title given to me by a fan.
Innards: Mild intrahepatic biliary dilation with prominent common bile duct dilation Stable. No evidence of metastatic lesions. Liver function tests are slightly elevated. Normal bilirubin.