My CO-1686 and the Joy of Metformin

My Oncology diploma from Google University does not hold water. In simple unadulterated English, my degree is worthless ca-ca. So, every statement in this post comes strictly from experience, observations, product literature, anecdotal accounts, common sense, and my inner genius.

The human body is a very efficient machine. Its design alone should awe anyone. For example, our nose is not located on top of our head, otherwise, we’d drown while showering. Our body speaks to us. Okay, I’ll speak for myself. My body talks to me. My stomach growls when I need fuel. When I am dehydrated, thirst leads me to a cold beer. Two years ago, an incessant cough told me, “Hey, you gorgeous senior babe you, I know you dislike doctors, but some creepy critters are trying to homestead in your lungs.” I recognize warnings, especially if they address me properly. I listened to my body and visited my Physician’s Assistant (PA). The visit, of course led to my lung cancer diagnosis, and eventually to this blog.

Perhaps it’s my imagination, but I think the cough stopped right after the visit with my PA. I don’t recall a hacking cough causing temblors during bloodlettings, CTscans, PETscan, MRI, biopsy, etc. Immediately after my Stage IV NSCLC diagnosis, I gained weight without any dietary or exercise changes. My body prepared me to deal with the cancer and the side effects of Tarceva, my first-line treatment. My wardrobe ballooned from Petite Medium to “Extra Grande” in the 20 months that I was on Tarceva, which shrunk my 3cm x 3cm tumor to a sliver. I did not mind the added pounds and inches. I was comfortable with the knowledge that a thicker slab of Intact Fat Plane was shielding my aorta from the cancerdude. I went along with the girth expansion program. I donated the smaller clothes and bought larger ones. And I happily transformed myself into a boisterous proponent of “Big is Beautiful.”

After Tarceva started acting wishy-washy, I joined the CO-1686 clinical trials, my second-line treatment. Six weeks of the trial drug shrunk the main tumor sliver to a tinier snowflake maybe even to a scar. Neither the radiologists nor my Onc’s Onc, the Lord of Lung Cancer (LLC), can tell the difference. While enjoying the first four months of the trial with zero side effects, I was so cocksure I’d get away scot free and even had the audacity to proclaim myself Queen of Zero Side Effects! During that time, Dr. LLC and I noticed that my blood glucose numbers were creeping upwards although staying within the normal range. Then came the “Other-Shoe-Dropped” event. High glucose caused maple-sweet urine to trigger a urinary tract infection, which caused glucose numbers to rise higher. That event marked the beginning of my CO-1686-induced diabetes and the end of my dream of setting a Guinness world record of experiencing zero side effects on a clinical trial drug. Bwaaahhahah! Dreaming is good.

To regulate the CO-1686-induced diabetes, Dr. LLC prescribed Metformin. Metformin according to product literature, among other things, DECREASES need for insulin, DECREASES absorption of glucose/sugar, improves circulation, improves satiety, decreases carbohydrate cravings – everything I read when I try to lose weight.

The weight-loss principle is simple, according to the last doctor I saw long before my cancer diagnosis. I had gone to his office because it was near my office and he required no appointments. I liked that. I also had a purpose. I told him I was 20 pounds overweight and the scale wouldn’t budge no matter what I did. Of course I minimized the nightly beers and heaps of jalapeno nachos at the bar. He prescribed “Meridia” the weight-control pill that was fast becoming the dieters’ darling at the time. He informed me that Meridia was originally intended to treat depression, but during the clinical trials, the obese depressed women lost weight! The pharma host decided to switch directions and develop Meridia as a weight-loss prescription drug. “Remember the principle,” said the Doc. “Insulin attaches to fat cells. Less fat cells, less insulin.”

Metformin reduces the body’s need for insulin, therefore it helps the body lose fat cells. In other words, it helps in losing weight. As a matter of fact, as I type this post, I’m wearing skinny jeans and still able to breathe. In two weeks of Metformin, my figure has returned to Petite Medium. Thank goodness my glucose readings have gone back to normal. I don’t want to lose any more pounds. My Intact Fat Plane and I have a deal.

I’m loving this CO-1686/Metformin cocktail combo!

But wait! There’s more. Metformin has all sorts of benefits for diabetics, pre-diabetics, cancer sufferers, etc. Here are a couple of links:

http://www.medpagetoday.com/clinical-context/LungCancer/35584

http://www.webmd.com/lung-cancer/news/20101102/diabetes-drugs-may-slow-lung-cancer

Another cause for celebration for Tarceva progressors!

My CO-1686: After 4 Months, the Other Shoe Dropped!

On April 22, 2014, I courageously swallowed the first 6 pills of the CO-1686 drug in the name of science. Four months later, after I had ingested 1,500 pills, the Trial Scientists ran my body through the CTscan tunnel to see what my innards have to say so far and to check if the trial medication is keeping the cancerdudes at bay. The lab folks drew about four tablespoons of blood to compare it to those of mere mortals whose lives are devoid of the excitement of participating in a clinical trial.

Unpleasant Side Effects, Suddenly

Up to about two weeks ago, I had had zero bad side effects. Then two weeks before the latest bloodletting, I experienced unusually frequent urination. I was hoping the cause was urinary tract infection (UTI). The biggest known side effect of the CO-1686 trial drug, of course, is glucose elevation, which causes frequent urination.

One morning, I just had to see my Physician’s Assistant (PA) to seek relief from burning urination following the frequent urination. The frequency was so extreme that I considered parking a sleeping bag on the bathroom floor next to the commode. Sure enough, high glucose numbers caused honey-sweet urine to aggravate the UTI, which in turn caused more glucose elevation. My PA prescribed an antibiotic for the UTI.

I emailed Hot Honcho Doc: “Just a small note to let you know that I lost my crown as Queen of Zero Side Effects.” I gave him the glucose numbers urine: 1000, finger blood: 326; that I’d be seeing him in 1-1/2 weeks; and to please advise.

He emailed right back. “We need to act sooner than that.” He rushed to me a 30-day supply of Metformin 500 mg and a glucose monitoring kit that has more accompanying literature than an I-Pad.

I emailed him again and thanked him for the quick response and to mention that in spite of the elevated glucose, I had had no dizziness, nausea, fatigue, loss of appetite, blurred vision, extreme thirst, toenail issues. Nothing.

He replied, “We want to keep it that way.”

I almost emailed back – but didn’t – that my post-Tarceva hair is on its way to making me a senior babe with big hair. I decided that’s for another email, another day, and another person who gives a hoot.

The Metformin script says to take one 500 mg pill in the morning. The trial nurse phoned in a revised order to add another 500 mg at night. The white pill measures 3/4″ long x 5/16″ wide x 1/4″ thick.” As I mentioned in previous posts, when it comes to swallowing pills, I am a drama queen. I WILL NOT swallow a pill the size of a hot link served in the bars downtown. Using a serrated knife, I carefully sawed a Metformin in half, then in quarters, then in eighths. Next thing I knew it was in powder form like cocaine. As seen on TV. I stirred the substance in a cup of coffee with cream until the stuff disappeared in the white beverage. Aaah…Metformin Latte! Other times I hid the “goods” in tapioca pudding or Greek yogurt. But the system created a new problem. I was beginning to think pudding and yogurt are yucky. I decided to just cut the horse pill in smaller portions and let a glass of water shove the mutilated pill down my throat.

The glucose monitoring kit is another story. For some reason, I have no qualms about poking my finger with a sharp lancet. Something mysterious happens each time I do it. My eyes glisten with excitement as I watch a red bead of blood form at my fingertip. Deep inside me lurks a mischievous masochist.

I took the first Metformin tablet on Friday night. On Saturday morning the glucose reading went down more than 100 points. By Monday, my glucose number was back to normal.

I emailed the Good Doctor, “My inner Wonder Woman and Mr. Metformin got my glucose back to normal. Do I get my crown back?”

He replied, “So far so good your majesty.”

There we have it!

August 25th Blood Tests, CTscans:

Everything acceptable according to the Big Kahuna.

SPECIAL TO ME: Cholesterol in normal range for the first time in my memory!

August 26th, 2014 Consult with Onc’s Onc, CTscan Results:

Scans showed stable. Nothing new, nothing grew.

ECG was good.

In short, everything is fine, so far, between CO-1686 and me.

So I join the commoners in testing my glucose daily – a small price to pay for allowing CO-1686 to keep the cancerdudes dormant. Plus Metformin is supposedly the new elixir! Plus I get my jollies. LOL!

I think I’ll wear both shoes now and moon-walk my way to the “Happy Dance” Pavilion.

My only lament in this whole episode is that we had to cancel a trip to London and Lisbon. It’s not advisable for anyone with a traumatized urethra to travel outside the country. Looking for a potty every fifteen minutes would not be conducive to a rip-roaring holiday. At least we managed to get some of our airfare money back. But hey! We’re talking positive thinking here. Let’s focus on the savings for not going on the trip – the thousands of euros and pounds that would have been paid for first class hotels, limo service, operas, caviar, and champagne. I love calculations based on the lifestyles of the rich and famous!

Ailments That Start with the Letters “CA”

As I age, I notice I’m getting diseases in alphabetical order. I am now in the “CA”‘s – cancer, cataracts. I have just recently completed cataract surgery – left eye a month ago, then right eye last week. I have been with lung cancer now for two years. That’s surviving, having been given eight months to live.

Considering all the letters remaining in the alphabet, I’m probably the only person on planet earth who thinks it’s a good thing cancer diagnosis came first. Cancer makes almost all other diseases seem like kindergarten. Cancer forces people to make life changes. I know it forced me to do two things:

1. Come eyeball to eyeball with my mortality. For me, this is the only redeeming value of cancer. It definitely yanked me out of LA LA LAND to confront my mortality. Following my cancer diagnosis, the thought of dying consumed me at least for a couple of days until my inner Superwoman grabbed a hold of myself. I’d watch True Crime on Investigation Discovery channel and I’d be wondering, Would being butchered be a better venue than cancer? Scampering away from the gory idea, I’d switch to Food Channel, but then I’d think, How about choking on a chunk of lamb chop? Dying is dying, for crying out loud. Anyway you cut and slice it, you’re dead. I’d read the obituaries of Farrah Fawcett, Steve Jobs, and Jeffrey Dahmer, among other beauties, brains, and beasts respectively who had gone ahead in the bucket-kicking department, and I’d say, Nobody is exempt from dying. Such is life. Everybody dies sooner or later. Death is the only true equalizer. It’s there. But why even go there? What matters is what we do from here to there.

2. Tackle “what we do from here to there.” There are no rules. Some people become ultra-religious. Some become altruistic. Some get very involved in noble causes. Any manner of coping with cancer is acceptable. Well, not quite any. Somebody I knew borrowed money from all his in-laws as soon as he found out his health was in extremely bad shape, then kept the diagnosis to himself. At his funeral service, the minister got carried away in heaping praises to the dearly departed. We on the pews looked at each other, mystified, wondering if we were in the right dead man’s room. Some get deep in the doldrums and drag their friends and family with them. Others keep busy. I blog to share my wealth of experience and offer positivity for those who need or want to take it.

So when my doctor told me I had cataracts, I chortled. He seemed perturbed. Obviously he’s not accustomed to meeting a jovial cataract surgery candidate.

The similarities of cataracts and cancer are amazing! Both afflict mostly “mature” people. Both don’t discriminate based on gender, country of origin, sexual orientation, religious affiliation, accents. Any mature person can get either or both: Democrat or Republican; cancer patient with low or high performance rating; blue collar or professional. Even my eye surgeon has had cataract surgery! Why do I get doctors who share my ailments? My Albuquerque Onc also has lung cancer.

The motions that lead to the treatment of cancer and cataracts are conducted in places where nose-pulling is the name of the game. Follow me. Put your chin here, forehead against this. Open your eyes wide. Blink. Look at the light. Put these dark glasses on. The patients’ companions play very important roles during the treatment of both cancer and cataracts.

The difference between cataracts and cancer is striking. Once cataract surgery is completed, a month of recuperation follows. It requires mostly putting drops on the eyeballs. And that’s the end of that. Cancer treatment, on the other hand, is a little lengthier process. At least for now. In the near future, who knows? If clinical trials like CO-1686 succeed, all sorts of great possibilities exist.

Me and Jackie Chan

Okay. The title may be grammatically atrocious, but it sure grabs attention!

About five years ago, I flirted with movie stardom. My husband, who has acting credits, turned me on to background acting. I learned that background actors, or extras, are vital in a movie. Imagine the “Ten Commandments” or “Pirates of the Caribbean” without the extras. For this reason, production crews and background actors treat each other with respect. They need each other. They eat the same yummy catered meals and all-day snacks. During the long hours of shooting, the background actors stay in an area called “holding” while waiting to be called. Some play cards, others read, others sleep. When I did background work, I solved crossword puzzles and ate and ate while waiting for the call. It was like being in a cruise ship. One could really get bored, too.

The movie “Spy Next Door” starring Jackie Chan gave me my first featured extra role. In this film my husband and I played the roles of husband and wife. While having dinner in front of a teppan chef in a Japanese restaurant, a feral intense martial arts fight broke between the Jackie Chan character and the bad dudes and they ended up dreadfully close to our table. My caring “husband” helped little ol’ distressed me away from the fast and furious action of karate chops, high flying kicks, and airborne chairs. After the shoot, I was quite convinced that my award-winning performance would lead to a juicier role for a senior Filipino babe. When the movie came to the theater near us, my husband and I went on the first screening and anxiously awaited our scene. Surprise! It never came. It had been cut.

Little did I know then that background work was preparing me for dealing with lung cancer. During shoots, extras are totally not in control. Talk about my nose being pulled by someone at every turn! Before a scene was shot, a production assistant went to holding and picked me out as having the right face. They do “faces” there. “Follow me,” she said. I hear those words a lot nowadays in the cancer center! When a production assistant yelled, “Ready, camera, background!” the word background might as well had been my name. When I heard it, I did what I had been told to do. No questions asked. No complaints lodged. No mutiny secretly plotted. One scene would be shot many times. Over and over we did the same action. At the cancer center, my arms get shot over and over for bloodletting. At the shoot, a camera would be placed right in our faces for close-up. At the cancer center, my whole body is placed in the CTscan tube for a close-up of the innards.

******

During one break, I happened to be all alone in the background-women’s restroom. I was on the way out of a stall when Jackie Chan walked in and closed the door behind him. Suddenly I was eyeball to eyeball with THE Jackie Chan in a toilet! We were both startled.

“Is that okay?” He asked, his Chinese eyes opened wide.

“Is that okay what?” I asked back, my Filipino eyes opened wider.

“That I’ll use the ladies’ room. The men’s room is too far away. I need to go now.”

Light dawned!

“Ah, THAT! Sure, that’s okay,” I assured him. “But first let me get out of here.”
And we laughed and I skedaddled out of there still laughing.

******

“It’s a wrap.” The Director shouts those words at the end of the movie shoot day. I so looked forward to those words all day that day, just like I look forward these days to the Onc’s words “It’s stable” after all the bloodletting and CTscanning are done.

So there we have it. Reel life and real life. They’re similar except for one thing. I could have walked away from the background nose pullers in a heartbeat. But I wouldn’t even dare think of aggravating the cancer center nose pullers. It wouldn’t be a good idea.

My CO-1686 Trials: A Flashback, Then Fast Forward

A Little Background:
I had been on Tarceva for 20 months when the cancerdude seemed to start to argue with it. My Onc, who also has lung cancer, referred me to his Onc at UCH Denver. His Onc in turn offered me a slot in the CO-1686 Clinical Trials if the re-biopsy of my main tumor showed I have the positive T790M mutation and I pass other requirements.

FLASHBACK: The Biopsy, March 24, 2014 in Albuquerque, NM.

After shelling out my co-pay, which drained my casino funds, my companion and I sat in the waiting room of the UNM Cancer Hospital Radiation Center. He started whispering to his smartphone, leaving me alone to think about my very slow progression on Tarceva, which had led to this biopsy. I kept thinking, Bummer! I have barely wound down from high-fiving anybody who cared to celebrate my EGFR exon 19 deletion, and now here I am facing the hunt for T790M or MET mutation. Why am I am back to acronyms and nomenclatures after swearing them off upon retirement from the engineering business six years ago?

A chunky nurse in her 40’s came and interrupted my musings. My companion and I followed her to the prep room where a nurse told me to change from my colorful muumuu to the faded blue cotton wrap opening at the back.

“Should I take off my panties, too?” I asked the nurse.

“No need,” she assured me. “We’ll work higher, a biopsy on your left lung,”

“Yeah, but what if my panties go all the way up to my chest?” I deadpanned.

“We’ll roll it down,” she countered. We all roared in laughter and the fun began.

She told me to lie down on a wheeled hospital bed, face up. She installed an intravenous (IV) stub-out on my right arm and connected my left arm to a continuously-reading blood pressure machine. Then she disappeared. Next entered a very young lanky doctor the height of Kobe Bryant, carrying a clipboard. Short and seated, I had to crane my neck way up to see his face. Doctors, like waiters, should never be this tall. They are hard on the patient’s neck. Anyway, the good doctor’s job was to frighten me. He spewed out all things that could go wrong in a biopsy: the needle could puncture the aorta, the lung could collapse. For good measure, he threw at me the term “pneumothorax” which got me shaking in my hospital socks. You could cough blood, he continued, or bleed profusely internally. I asked him, “So, if any of those things happen, would you guys know how to fix the problem?” He smiled faintly and shrugged his shoulders.

At the appointed hour, two nurses wheeled me out on the corridor into what looked to me like a large storage room. A female radiologist in full surgical regalia was waiting.

“Is this where it’s going to happen?” I asked. I had expected a more elaborate scenario.

“This is it,” she said. She ordered me to lie on my stomach on a long narrow bench, with my hands stretched up.

As I turned my head to breathe, I commented, “This bench should have a hole for the face like a massage table!” The two nurses, the surgeon, and Dr. Kobe Bryant totally ignored me. As soon as I felt a needle jabbed into my back, the lady surgeon began to talk about her little daughter’s private swimming classes. The male doctor would not be outdone. He chimed in his young son’s lessons in a city pool. I was like the patient in the old TV sitcom hit M*A*S*H*! In less than an hour, the dissertation on swimming lessons and the biopsy were over. None of the scary catastrophes discussed by Dr. Kobe Bryant happened. I live to tell the tale!

Two weeks later, the biopsy result showed T790M positive, which gave me enough excitement to high five anybody within ten feet radius from me. On April 14, 2014, I signed the consent papers to participate in the CO-1686 Clinical Trials.
END OF FLASHBACK

FAST FORWARD: August 5, 2014
This was the beginning of my Week 15 on the trials. Instead of giving me bad side effects, the CO-1686 drug lowered my historically high cholesterol. How good a side effect is that! Two scans so far showed shrinkage of the main tumor and decrease of the tinier ones. Many other tiny nodules too numerous to count remain, but I insist they are scars caused by infection from dried bird “caca” that I accidentally inhaled under the I-25 freeway bridge in Albuquerque. Of course nobody gives a hoot about my medical expertise.

I did my thing to fulfill the special urine specimen collection and decided not to participate in it anymore after this one. The last two times I went through a lot of trouble doing it diligently but when I turned over the bio-hazard package to the lab, nobody seemed to know why I was giving it to them.

At 7:00 o’clock, I gave 3-5 tablespoons of blood for the clinical trial study and for analysis to see how my system reacted to six CO-1686 pills in the morning and six in evening in the past three weeks and the past 15 weeks cumulatively.

At 8:00 I met with my Onc’s Onc. Having no negative side effects to discuss, we continued to talk about cutting down my visit from every three weeks to every six weeks.

I did the ECG’s and the results were fine.

The blood test results, including glucose, were all within normal.

In short, the CO-1686 drug and I are getting along famously. So far so good. Onward with the 6 pills in the morning and 6 pills at night for the next 21 days!

Another ray of hope for Tarceva Progressives!