Tarceva Resistance – When it’s Time to Move On

So I had been on Tarceva for 18 months and doing great. Attababe, congratulations to me! But a little voice told me that one day Tarceva will meet resistance from the smart cancerdude. Hoping that the little voice was off its rocker, I asked my Onc, who also has lung cancer, what he thought. “Oh, definitely, you will have resistance — if you live long enough!” my Onc assured me. I told him I needed his assurance like I needed a biopsy atop the aorta. And we roared in laughter. Then with the next CTscan came the tiny, tiny progression. The question, To change or not to change treatments, stared me in the face. If it were you, what would you have done?

“Talk to your Onc.” That’s what people will probably tell you and they should. What will the Onc tell you? He’ll probably give you a couple of options based on (a) his education, (b) his experience, and (c) his opinion.

“Talk to another Onc.” Other people will probably tell you. It’s another way of suggesting that you to get a second opinion. What will the second Onc tell you? He’ll probably give you a couple of options based on (a) his education, (b) his experience, and (c) his opinion.

“Talk to Celia.” You knew that was coming! I am not an Onc, therefore I will not give medical advice or any advice that will affect anybody’s wellbeing, like, ignore those symptoms; they’ll go away. But I might say, Use Philippine coconut oil. It’ll make your skin soft and silky. Feel mine. LOL. I would never, ever tell anyone to lower or increase dosage of any drug. What I am is a blogger who has lung cancer, a colorful past, and more opinions than the OpEd page of New York Times. What will I tell you? I’d probably give you an opinion based on (a) everything I’ve learned from Google University, (b) everything I’ve heard first hand from Oncs and (c) my awesome life experiences that apply.

From the Google University, meaning, from Inspire.com and cancergrace.com, etc., here is one very good link that can help you decide on which option to take.

http://cancergrace.org/cancer-101/2014/04/04/50-shades-of-progression/

So now, after talking to one Onc or two Oncs, and reading another Onc’s blog, you have more questions than answers. It’s decision time and your Main Onc gives you options.

This was my situation. After I bombarded my Onc with Tarceva resistance questions after every CTscan, he finally threw in the towel. I wore him out. He said there’s no more drug in the cancer medicine cabinet. He mentioned Afatinib, recently FDA-approved and which had been groomed as the Son of Tarceva. My husband and I shot that idea down because of the negative things we’d read about it. Finally, in exasperation, he said, “I’ll refer you to my Oncologist. If he’s good enough for me, he should be good enough for you.” I liked that.

So I met my Onc’s Onc, whom I bowled over with my Tarceva Diva title of the moment. After looking at my case history, he said my tumors were the very-slow-growing type, then gave me three options: (a) Stay on Tarceva, (b) There’s always chemo, and (c) If I qualified, he’d put me in a clinical trial. Without hesitation I chose (c) clinical trials.

Here are the reasons why I chose (c):

(1) Honest Auto-Criticism. I could have just said I was being honest with myself but I woke up this morning with a crying need to impress. In the final analysis, only the patient knows her worries. The Onc has worries of his own.

(b) Opportunity. In life, we get certain windows of opportunity. If we don’t act within that window of opportunity to solve a problem, we might as well kiss the solution goodbye. To me, dealing with a disease is similar to growing a business. A business goes kaput if suddenly there are no projects for employees to work on or no merchandise on the shelves to sell. The time to look for projects or merchandise is not when they’ve run out. Same with cancer, I acted pro-actively. I read about people running around like crazy looking for clinical trials while there I was, being given a clinical trial as an option. Why not take it?

(3) The pioneering spirit. It jumps like a pogo stick inside me, pushing me to the path not taken.

The jury is still out on my decision, but I stand by it.

That’s the word today.

What say you?

CO-1686 Trials: Halfway to the Second 3-Week CTscans!

The distance between my house in Albuquerque, NM and the UCH Cancer Hospital in Aurora, CO is 447 miles. I would like to claim that the number originated from my head and that my civil engineering years honed my knack for calculating distances between any two points on the earth’s curved surface. But I can’t do that. More than a decade ago, the internet rendered useless my mathematical prowess. Before the Web stripped me of my power, I would have assigned this stretch of I-25 an important nomenclature. Now all I can do is call it “the route.”

On June 23rd, my husband and I hit the route again to report to the clinical trial honchos. It had been three weeks since the first scan, which yielded satisfactory results. It was time again to see what the CO-1686 trial drug had done to my system over the last 21 days. We have gotten accustomed now to our new normal of going back and forth the route every three weeks.

The digital clock near the hotel bed said it was June 24th, 5:12 a.m. I got up and tiptoed in the dark to the bathroom to collect urine as I had volunteered to do for the trial. Once inside the bathroom, I turned the light on. A frightening face in the mirror shocked me! It was mine. My now-growing Tarceva hair was on its end, my mouth had crumpled and my cheeks hollowed. What happened to the gorgeous senior babe? I knew the answer but I had a bigger problem. I had to follow instructions in a specimen collection kit.

FLASHBACK:
Three weeks ago, my Trial Coordinator informed me that the trial honchos told her we had not been doing the urine collection properly.

“You mean all this time you guys have been wasting my urine?” I asked, then I quickly realized that urine is already waste. It’s not a precious commodity that can be traded in the stock market. “So how do they want it done?”

“You have to collect the first draw in the morning.” She gave me an intimidating-looking lab specimen collection kit marked BIO-HAZARD. “Do it in your hotel room before coming to the lab.”
End of flashback

So there I was at crack of dawn studying the kit in a clear plastic bag. There was a three-inch cube of sponge, in which is a hole holds a sealed specimen bottle. There was a small see-through plastic bottle the size of a nail polish, containing a bluish green fluid. On it was written “Do not drink this fluid.” Thank goodness they warned me! There was a plastic pouch with liquid that was supposed to be placed in a freezer. Dry ice, I gathered. Finally a pair of blue plastic gloves. So I figured, the urine goes in the specimen container, the bluish green liquid is a urine preservative, the gloves are to protect my fingers from staining, and the pouch is to keep the urine cool. The urine would be treated like a trout freshly snagged from a cold Colorado stream.

As my husband drove to UCH Cancer Center, I held on to the fulfilled specimen kit with my two hands, like it was a potted plant. From the parking lot to the lab, I held on to the specimen kit as if my life depended on it. When my name was finally called for the arm drawing of blood, I could hardly wait to turn over the specimen kit.

“Here, please take this from me.” I begged the medical technician. “I have been carrying it around like I am a walking commode.”

At the appointed hour, my husband and I sat in an examination room. In a few minutes, my Onc’s Onc and my Trial Coordinator strode in, both grinning from ear to ear.

“There’s my favorite patient!” said my Trial Coordinator, a sweet compassionate 26-year-old girl who had adopted two dogs with physical problems.

The good doctor said all blood numbers, including glucose, within normal range. I said my cholesterol still significantly lower. EKG was good. Pharmacy gave me the 252 pills for the next three weeks.

Since there were no side effect issues to discuss, we talked about my new gig – guest blogging for the University of Colorado Cancerblog. And we laughed. When it was time to move on, my Trial Coordinator and I gave each other a big hug.

“I want one of those,” said the Good Doctor. And we hugged.

We’re family now.

Tell me what you think!

“celpeggy” aka “poksa” Unmasked

My husband has wholeheartedly embraced his role as caregiver. Since we go to the University of Colorado Hospital Cancer Center (UCH) Clovis trial clinic every three weeks, he thought of surfing the UCH website. He was hoping to discover stuff that we might not want to miss out on. A Northwestern graduate who majored in communication, he zeroed in on UCH’s publications: cancerblog and magazine. There he chanced upon a boxed article titled TELL YOUR STORY, the spiel of which was: “Every cancer patient, survivor, and caregiver has a unique story that can impact people recently diagnosed, families struggling to stay positive…..yada…yada.” In short, it was an invitation for the reader to submit his or her story by filling out a form. My husband printed the form and handed it to me. For his thoughtful deed, I gazed at him lovingly a la Nancy Reagan, thanked him profusely, then gave him a little static for not saving trees. He could have just forwarded the link to me instead of making a copy of the article.

Anyway, TELL YOUR STORY! Tell my story? That’s what I do. I got on the computer and pounded the keys, telling a story, which I titled “From Cancer Ignoramus to Cancer Info Blogger.” After I finished the piece, I re-read it, declared it awesome, and hit “Submit.” On the very same day, I received an email response! The UCH Communications Director wanted to publish it, giving me several options. I emailed right back and told her I’d be at UCH on June 3rd, for clinical trial business, perhaps we could meet and discuss the options.

She: “I’ll meet you at the hospital lobby.”

Me: “Yes! To help you recognize me and not confuse me with some other senior babes, I’ll wear a red beach hat.”

Done deal.

At the appointed time and place, the parties agreed that I will be a guest blogger for the UCH Colorado Cancerblog using my real likeness and real byline. But first I had to sign a consent form that contains frightening language. So, with this post, I am officially sashaying out of the shadow. Please take note: JUST THE SHADOW, not celpeggy.wordpress.com! Since I will no longer be writing incognito, I will update “About Celpeggy” on my next post here.

This blog space of mine is in the “el cheapo” category. I pay no fee for it, therefore, it allows no ads, no photos, no color, no fancy graphics. If it does, I don’t know how to do it. Learning something beyond writing blog contents is for me another story, another day. Fortunately, there are no rules against links here. You can see the UCH’s new guest blogger’s photo and maiden post, “Stigma and Fear of Cancer” through this link:

http://www.coloradocancerblogs.org/category/in-the-clinic/

Go ahead. Give me your thoughts. I can handle it.

CO-1686 vs Diva’s Lung Cancer (cont.)

The CO-1686 pills are small, round, and yellowish. Swallowed one at a time with a glass of water, they slide down the throat without any hassles, especially for me, drama queen pill taker. However, I’m thinking, if they will ever be sold in the pharmaceutical market in this form, and at six pills a pop two times a day, wouldn’t it be nice if they were the chewable kind, cinnamon-flavored, if possible? How about that for lung cancer pill innovation?

My lung tumors have had a two-year history, as far as I know. It could be longer. They could have been there when I entered this world kicking and screaming. I was reportedly giving it my all! “This kid has pretty strong lungs,” the midwife told my mother, whose story echoed for years until she passed away at age 85 in 2007. What does that tell us? We’re talking here about my infancy that happened a hundred years ago. LOL!

The battle between the CO-1686 pills and my lung tumors continues as my participation in the Clovis clinical trials enters the eighth week. I still have had no side effects. I wonder if the midwife that delivered me saw something in me but kept it a secret from my mother.

In my excitement over the result of my six-week CTscans done on June 2, 2013, I made a blog post ahead of the radiologist’s written reports. Yesterday I finally had the opportunity to read them.
UCH is a teaching hospital, so analysis of scans are done first by a resident, then overread by his or her superior. I’ll just share the observations of the superior (Attending Overread) because it’s what matters. The resident has yet to earn his stripes. The Attending Overread wrote:

“Multiple pulmonary nodules have decreased in size. Primary spiculated left lower lobe lesion and adjacent satellite nodules have also improved. No evidence of metastatic disease elsewhere.”
And everything else is “unremarkable.”

Radiologists obviously don’t get carried away with the vocabulary of the highly excitable patients. Where I wrote “tremendous shrinkage” in my post, he wrote “improved.” No measurements are given I think because the nodule is shaped like a snowflake. I could only tell the “before” and “after” difference from the size of the snowflakes.

I had also given ten tubes of blood for analysis and determination of the numbers that my Onc’s Onc looks for, like bilirubin of the liver, kidneys, glucose, potassium, cancer markers, etc. The results were all within the normal range.

The reason I was excited about the first CTscan was the absence of the drug’s side effects on me. I got used to Tarceva, which tortured me with side effects on its way to whacking the tumor down to a tiny snowflake. Without giving me side effects, I figured the CO-1686 was just sitting there.

Here are my own observations of how I’m doing in the clinical trials so far. Remember these are observations of a layman (or laywoman).

1. The total absence of Tarceva from my system does not seem to bother my tumors.
2. The absence of side effects from the CO-1686 drug does not mean the drug is not working.
3. And here is the best of all – THE EFFECT OF CO-1686 ON MY CHOLESTEROL. My cholesterol readings have been historically high. Even when I was younger, the numbers were way over the top. Blame it on my insistence on the real things: butter, not margarine; half and half, not skim milk, marbleized steak, not chicken breast. I don’t do non-fat or low-fat in ice cream. Either I’m eating ice cream, or I’m not. You get the picture. Anyway, from the day I started on CO-1686 to the day of the six-week blood tests, my cholesterol readings gradually and significantly decreased! For the first time in my life, my cholesterol numbers are in the normal range. Okay, so it’s near the high end, but at least it’s INSIDE the range. Which reminds me of when I tried to lose 15 pounds 15 years ago. My doctor prescribed MERIDIA, a weight-loss drug. He said Meridia was initially developed to treat depression, but during the clinical trials, the trial honchos noticed the obese depressed people were losing weight! The rest is history. I brought the dramatic change in my cholesterol numbers to the attention of the powers-that-be at the clinical trials. It seemed like the thing to do. CO-1686 just might be on to something here.

So, on with the six pills of CO-1686 twice daily!

Cancer Diagnosis is Not a Death Sentence

When I was on Tarceva, in the wee hour of one morning, I had an epiphany. As I was traipsing in the dark to the bathroom to take my miracle pill, the glow of the power light of my cell phone on the vanity gripped my attention. I stared at it, and lo and behold, the color of the light changed mysteriously from red to green. My heart pounded.

“Honey,” I whispered in a voice a tad loud for one o’clock in the morning.

“What?!” My startled husband asked. He was now sitting on the edge of the bed, his head buried in his hands.

I described to him the phenomenon that I had just witnessed.

“Oh for crying out loud. You’re an engineer. You know it means the phone’s battery is now completely charged.”

“Yes,” I admitted sheepishly. “But I have been waiting for a signal from the cosmos to proceed with my long-overdue bestseller.”

“So be it.” He flung himself on the bed and covered his head with a pillow.

So be it. Those sweet supportive words from the lips of my loving caregiver gave me the final push to get on with my writing project. But first I had to ensure there are no existing books on cancer and humor. I went to the neighborhood library and researched, and sure enough, I found a book titled “Cancer on $5 a Day* * chemo not included.” Written by comedian Robert Schimmel with Alan Eisenstock, it is about how humor got the comedian through his battle with non-Hodgkin’s lymphoma, the same cancer that claimed Jackie Kennedy Onassis’ life. My discovery of the book filled me with disappointment. Someone’s gotten ahead of me again. Story of my life. Always behind. It all started in grade school when the class would fall in line alphabetically. With the surname starting with “R,” I was always near the end of the line, craning my neck over and around classmates to see what’s going on way out front.

I grudgingly checked the book out. The image of the comedian’s gaunt face covers much of the jacket. The book contains only 189 pages. Good. I figured, even with Adenocarcinoma Stage IV, I’ll live long enough to read it from cover to cover and return it early to avoid a penalty fine. If I intend to straddle my heirs with debt, it will be for a timeshare in Mexico, not for a library penalty fee. I started reading the book. It’s hilarious. Everything rings true – of dreams mercifully cut short, anxieties, denials, etc. The comedian and his writer did a fabulous job. Then, halfway through the book, I stopped. Somehow I felt like I had known the comedian for years. I revisited the image of his haggard face on the jacket and took note of the book’s publication date: 2008. That’s five years ago. Cancer must have already claimed the life of this man who valiantly brought laughter to sufferers as he himself fought the dreaded disease. Cancer be damned, I muttered to myself. To verify my suspicion, I googled his name, and voila, I was right! Robert Schimmel is already dead. He was killed in a car accident in Scottsdale, Arizona in 2010.

So there you have it. Cancer diagnosis is not a death sentence. Who knows! I might live long enough to get Alzheimer’s. And that would be scary to my heirs.

What’s your opinion about cancer diagnosis?

The Fluky CO-1686 Hawker

When I surrendered my crown at the Tarceva Divas and Dudes site, an awkward problem confronted me. My stint as Moderator Queen Diva Poksa had stirred my creative juices. Suddenly, they had no place to go. What should I do with my gift of the written and oral gab? With the dire economy, there are no gigs for professional motivational speakers like me. We’re not talking Hillary Clinton here. People don’t need my speeches. They need toilet paper. So for a moment, I was in the dark, but not for long because suddenly light dawned! I could do blogging. I had thought about blogging and making tons of money from it when I retired as CEO of my company. There was one problem. I was clueless. In retirement I am no longer surrounded by technical people at my beck and call. I had no choice but to face my problem head on and learn this blogging stuff.

For a start, I decided to blog about the CO-1686 clinical trials in which I’d be participating. The intent was to inform my friends and family about this new pioneering adventure of mine. Surely they’d be asking me, How is it going? Blogging would keep me from repeating the same answer over and over to over a couple of dozen people. That was motivation enough. I went to WordPress.com and followed the instructions on how to blog. I did the piece titled “Queen Diva Poksa Abdicates.” As soon as I crossed the T’s and dot the I’s, I hit “PUBLISH.” Immediately, my first post attracted three people including a ten-year-old Romanian boy who told me I could ask him to do anything except sing. He was not exactly my intended audience, but the response delighted me. It assured me that my post went beyond the confines of the four walls around me.

After I posted my account of my first day at the clinical trials, “Testing Positive for T790M is Not Everything” the response surprised me. Everyday, 35 to 50 viewers, about one-third of them from Inspire.com, visited my blog. I thought, Who are those other people? Do they have cancer? Are they just looking for laughter, humor? Are these people with cancer looking for laughter, humor? It didn’t matter. I kept posting.

Nothing prepared me for the response to my last post “CO-1686 vs Diva’s Lung Cancer: the Verdict So Far.” The day started as usual. The viewership rose over the 35-50 viewers during the 24-hour period. The following day, the viewership flew off the chart. Suddenly there were hundreds of them. OMG, I thought, The aliens have invaded my blog. My site is under siege. I went to the back room of my blog site to see where the viewers were coming from. What I saw floored me. They were from Twitter, financial markets including Yahoo, and investors’ sites. I just had to email my buddies at the clinical trial about my shock:

“You won’t believe how my latest blog moved the Clovis market. Hundreds of views from investment groups and investors. I thought it was my awesome writing style that attracted them. No, it was the good news about CO-1686.”

“That’s great news!” said one. “I’ll pass it on.”

“Great power comes with great responsibility,” added the powerful sage in the group. “Now you must tell the truth if the jobs of those people are in trouble.”

To that I responded, “Absolutely! Only the facts, sir.”

Exhilaration enveloped me in the middle of the social media stir. And I am so glad I brought good news to Tarceva Progressives, other cancer sufferers, caregivers, even investors!

What do you think? Tell me. Let’s talk.

CO-1686 vs Diva’s Lung Cancer: The Verdict So Far

June 2, 2014 – June 3, 2014

It’s the Battle of the Stubborn Stuff: CO-1686 versus lung cancer. For six weeks, I ingested a total of 492 pills of the CO-1686 trial drug. In that same period, the Clovis Trial folks drew several tablespoons of blood from me and I gave them ounces of urine samples in half a dozen specimen cups. I think that’s the only way of fluid transfer in the urine department! Subsequent laboratory analysis showed the drug did not trample my liver and kidneys as it made its way to try to beat into a pulp the 1cm x2cm nodule and two microscopic ones at the bottom of my left lung. Since April 22nd, the CO-1686 drug and my malignant nodules have been waging a raging battle for the right to exist. Of course, the intent of the clinical trials is for CO-1686 to win. I haven’t had any side effects. No glucose elevation, no loss of appetite, no fatigue, no rashes, no post-nasal drip, no toenail issues, no “squirt” diarrhea, nothing. What has the drug been doing? On June 2nd, the CTscan, the one and only judge of this conflict, went to action. It came out with the score card in images that tell the tale. Dr. C, the Good Doctor, read the score card.

And the winner is….”moi!” LOL!!!

Okay! So I speak French when I get excited. But winning is winning in any language. And the scans showed I won!! Today is Exclamation Point Day!!!

I don’t have the radiologist’s report yet in my Patient’s Portal but my Onc’s Onc and I viewed and reviewed the CTscan images together. The “after” pictures were beautiful! The main tumor shrunk tremendously and the two tiny tiny ones became almost invisible! The “too numerous to count” nodules in both lungs seemed fewer, but I insisted again they were not cancer, but rather, infection from the dried bird “caca” that I accidentally inhaled under the I-25 overpass in Albuquerque. Like all others before him, my Onc’s Onc laughed.

I was so excited about the news that I just had to post this using the clinic’s computer.

More detailed story later!!!! I’m going to do cartwheels all the way to the bar in the next zip code to have a beer! But wait a minute…there are other considerations here..like my caregiver/husband.

Go ahead. Tell me what you think! Ask questions!