“Goodbye, Tarceva,” says Diva.

And so it came to pass. I took the last Tarceva pill on Friday, 19 April, 2014 to make way for the trials. That means if Tarceva were to be re-challenged, l have enough leftover Tarceva pills in the medicine cabinet to last me until I reach ripe old age, which is pretty shortly.

On April 21st, while my husband was paying attention to the happenings on northbound I-25, I was reviewing the photos texted to me on Easter Sunday. The picture of the colored eggs with faces and feather beards grabbed my attention. My only grandchild, the seven-year-old son of my only child, had made them. And then, as I was chuckling, something happened. The Easter eggs reminded me of my retirement nest egg. The cost of these trips to Denver and back are posing a serious threat to my casino funds. I immediately emailed my trial coordinator and expressed exactly my concern and asked her if by chance, my trial-related travel expenses are reimbursable. She laughed at my worries, but yes, she confirmed, I will be reimbursed. At the next gas stop, I bought a couple of lottery crossword puzzles. Why not, I was on a roll!

Dinner that night marked the end of my food intake for the day. I had to fast prior to the blood draw the following morning.

Early the next day, April 22nd, I checked in for the blood draw. The receptionist asked me to choose one of three options: an IV (intravenous), an arm draw, or a third one that I missed entirely because the arm draw got me so excited. I chose “arm.”

A pretty young slim thing with a Cleopatra hairdo greeted me. I raised my hand and told her “High five!” She obliged and laughed, then frowned. Clearly, she had never met a patient in such a celebratory mood just before bloodshed. In the curtained cubicle, she placed ten, yes ten, as in two times five equals ten, small color-coded tubes on the tray. The drawing went much faster than the one a week ago, which was through an IV stub-out.

“Your blood flows real good,” she commented.

“I probably was a bride of Dracula in a previous life,” I explained.”

After the bloodletting, my caregiver rushed me to the hospital cafeteria to get me something to eat and end the 18-hour fast. The Colorado burrito never had a chance to be analyzed by the New Mexico fiery food aficionado.

Next I checked in for the meeting with my Onc’s Onc. The intake nurse measured my blood pressure, weight, and body temperature. Finding nothing out of the ordinary, he escorted my husband and me unceremoniously to the examination room. In a few minutes, the world renowned good doctor strode in. We kidded about the Tarceva Diva and talked about family, trial issues and stories, etc. Throughout the conversation, I could not help but admire the harmonizing of our diametrically opposed foreign accents – his of the cold Atlantic sort and mine of the warm rice-paddy variety. Then he went through the motions that physicians do with the stethoscope, listening to my heart and lungs. He reviewed the latest blood readings, took notes, and announced gladly that I may now start taking my CO-1686 pills, and turned me over to my trial coordinator.

My trial coordinator did an EKG on me and when it was done, she gave me a white paper sack that had 12 sealed plastic medicine bottles containing a total of 252 round pills. She told me to take six pills in the morning and another six at night with food. I had to confess to her an overture for approval to cut the pills in half. When it comes to taking pills, I have always been a drama queen. I am not a taker. I only take pain pills when absolutely necessary. When I was a little girl, my mother used to crush a pill and hide the resulting little grains in a piece of an overripe banana, which I could swallow. Or she would smash a pill into powder form, put it in a spoon with water, which I could swallow. To assure me that the CO-1686 pills were not as large as horse pills, the trial coordinator opened a bottle, counted six pills, and handed me a glass of water. She and my husband watched me take one pill, one gulp, six times. At the end of the last one, we all broke into laughter. The Diva survived her clinical trial’s first dose! Two hours later, I went through another EKG to make sure my heart was still beating after 750mg of CO-1686 bombarded my system. It was.

And so another day at the on-site clinical trial ended. As my husband and I walked to the car in the sprawling parking lot, the day’s events so stoked and energized me that I felt like doing cartwheels all the way home to Albuquerque. But then it dawned on me: that can only be fun if I were wearing a mini-skirt!

Testing Positive for T790M Is Not Everything

04/14/2014 – SIGNING MY LIFE AWAY AT THE UNIVERSITY OF DENVER CANCER HOSPITAL

On the 14th of April, as my husband was driving leisurely on I-25 going to Aurora, my mind was off on a tangent thinking, Retirement is quite a deal! Of course the things I had in mind when I sold my engineering business in 2008 did not include burning a path between Albuquerque, New Mexico and Aurora, Colorado as I participate in a clinical trial. Lung cancer made me do it. It’s never a good time to have cancer, but having cancer after five years of retirement is much better than having it during my working days. Glass-half-full kind of old chick here!

After paging Trial Coordinator Lauren, my husband and I waited at the hospital lobby for her to come and escort us to the activity of the day – signing the consent papers. As soon as she appeared, she said “Celia?”

“Yes I am,” I replied.

“Tarceva Diva?” she asked. And we laughed. She added, “Dr. C told me, ‘You’re going to love her.'”

Her statement so flattered me I felt like running to Dr. C’s office, to hold his face between the palms of my hands and kiss him on the forehead. The world renowned doctor had taken a tiny chunk of his busy schedule to say something personal about me to the trial coordinator. He made me feel more than a number in CO-1686 project.

Lauren handed me the paperwork. It was as thick as a small town’s white-pages directory. Someone in another trial had warned me that my hands would get tired signing. I started looking around.

“What are you looking for?” asked Lauren.

“An open space,” I said. “To rest my hand, I’ll go into a yoga lotus position for every five pages that I’ve signed.”

“You don’t have to sign, just initial.” And she smiled, baring acres of white teeth.

With her reassurance, I stayed put and listened to her explain every page. Participation in the trial is voluntary; it might work for you, it might not. Then she launched an explanation about Clovis Oncology, the sponsor of the trial, the good it is doing toward finding a cure for cancer. For a moment I thought I was going to have to write a check to Clovis Oncology. Most everything is paid for by the sponsor. But you are not going to be paid either. She took about the risks and benefits, yada, yada.. I came to say yes to everything so the whole exercise was a no-brainer. I initialed all the blank lines and told her I’d initial anything else, including the surrender papers of the United States.

04/15/2014 – SCAN, MRI, EKG, BLOOD MOON DAY

“Remove everything above the waist and put this gown on, opening at the back,” the sweet young lady technician instructed me. I went to a dressing room, obeyed her orders, and looked at the mirror. My appearance miraculously changed from spiffy to spooky. Without my fashionable wig, my kinky Tarceva hair jockeyed for position in clumps, ends pointing everywhere. My cheeks, mouth, and lips crumpled and sank in the voids left by dentures and partials. Good thing the CO-1686 trial is not a beauty contest.

First up was CTscan with contrast. This involved putting an Intra-Venous stub-out in my arm in front of the elbow. This is where the nurse directed the contrast solution that would make me feel warm and tingly, as in wanting to go potty. I noticed the solution, once it started coursing through my vein, gave me a much warmer sensation than the one I had in Albuquerque. Must be the Rocky Mountain High.

Second up, MRI with contrast. The IV stub-out came in handy for the contrast solution. Having experienced two MRI’s before, I anticipated 30 minutes of torture, listening to sounds similar to the pounding of hammers on nails and the chugga-chugga of an approaching train. The music in the radio through the earphone hardly covered up the noises. Fortunately I fell asleep.

Third up, urine and blood drawing. The IV stub-out came in handy again. But first, the nurse warned me sometimes it doesn’t work because the blood refuses to come out. Well, the IV worked. She put out nine, yes nine as in five plus four equals nine, small tubes to be filled.

“Are you sure this is not the Red Cross?” My husband asked.

She succeeded in slowly drawing out blood from my arm and got enough to fill the nine tubes.

I asked her, “Is that the equivalent of bleeding profusely like in Investigation Discovery true crimes?”

“Oh no, you’re talking 100 cc of blood there. We just took the equivalent of a few tablespoons from you. Be sure to eat lots of food later today,” she suggested. Her full figure practically filled the blood-draw cubicle, leaving, thankfully some space for me, the tools of the bloodletting trade, and my husband who was practically outside the curtain. The cubicle was so tight that the whole time she was watching the syringe suck blood out of my arm, my elbow was pinned into her boob. When she mentioned food, I imagined her waddling back and forth in front of miles of steaming trays in an eat-all-you-can buffet.

Fourth and last up, meeting with my Onc’s Onc. I was waiting to be ushered in to the doctor’s examination room when an emergency arose. Lauren came huffing and puffing. She said one of the nine tubes of blood clotted too soon. I had to be poked one more time.

At last, one on one with the Good Doctor. At this time, he had already seen the results of the pelvis scan (no mets anywhere), the MRI (brain: nothing there, unremarkable) and the blood tests (all within normal range). He said, “You passed everything. You are pretty healthy.” I agreed. I am very healthy except for the damned cancer.

Before he left the room, he had Lauren do the EKG on me. Passed that, too.

We started the long drive back to Albuquerque. I was pooped from all the abuse that my body took, but happy that I passed every hurdle. I’m officially in the trial CO-1686 Phase 2.

The Re-Biopsy Result

BIOPSY RESULTS AND THE NEXT STEP

This post is for the benefit of my friends who have asked that I keep them abreast of the developments in the continuing “Saga of a Tarceva Diva’s Tumor.” To ensure that none of them misses the news, this update is posted in Inspire’s Lung Cancer Survivors, TARCEVA DIVAS AND DUDES, and in my personal blog, which is being followed by a few people. Three to be exact, including a ten-year-old boy in Romania who wrote that I can ask him to do anything except sing.

The biopsy was done on March 24th. Four samples were taken. To be considered for the CO-1686 clinical trials, we were hoping for the mutation T790M. And the results showed…..drum roll…T790M! So off to Denver the Diva goes on the 15th of April to meet with her Onc’s Onc, then through the screening process, tests, scans, etc. all the good stuff, with a view toward getting into the trial and clobbering the tumor(s) that stopped responding to Tarceva.

Queen Diva Poksa Abdicates

This week marks the end of my reign as Queen Diva Poksa.

It has been a great five months since I began moderating TARCEVA DIVAS AND DUDES. It all started when the site founder, MARIE ZEE, became ill. Rita, a Russian immigrant going by the handle (okay, Username so I don’t show my age!) RUSSIA, took over. Language was no barrier for her. She went after the program with gusto, advising Tarceva users the best way she could. Then RUSSIA got sick on the job! Right then and there she cried for help with the site because she was seeing double. Renee, a well-meaning frequent Inspire poster known by the handle DAVSTAR, made a big fat frantic announcement about Russia’s predicament. Moved by a sudden unexplained need to be needed, I offered to help Russia temporarily. Felicia, a frequent poster at Inspire using the pseudonym FHONEYMOM, said she could help as soon as she started feeling better. A few days later Marie Zee was dead and Rita was still sick. Felicia decided to go on an extended vacation and eventually passed away weeks later, but not before she declared me the Queen Diva Poksa. I accepted the job and the rest is history.
Beth aka BRANASTASIA wholeheartedly accepted the reins of TARCEVA DIVAS AND DUDES and Marie Zee’s legacy lives!