My CO-1686 Metformin Front and Center

Last post https://celpeggy.wordpress.com/2014/09/20/my-co-1686-6th-month/ I reported that the Relief Onc (RO) in the absence of my Onc’s Onc, raised my Metformin dosage from 1000mg daily to 2000mg daily all because my glucose reading that morning was 190 compared to 117 three weeks before.

Prior to the dosage change, a little discussion had ensued.

My husband said to RO, “Maybe we should see first how the glucose numbers go before adding 1000mg.”

“Yes, we can do that,” replied RO.

“No, let’s raise it now,” my number one advocate insisted adamantly. That would be me. I wanted the big-dose Metformin handy in case the glucose numbers shot up uncotrollably like what some trial participants experience, according to the boards.

“Yes. You want to do that? Let’s do it right now,” said RO.

RO was the agreeable kind of guy. I bet he votes “yes” to all municipal bond issues during elections.

That same day, Tuesday, I started on the Metformin 2000mg per day.

The loss of appetite caused by the initial Metformin 1000mg had just barely disappeared when the additional 1000mg carpet-bombed my system. Suddenly the Metformin 2000mg megadose side effects were like a grizzly bear mauling my body, tossing me around like a rag doll! Diarrhea got me strategizing restroom coordinates. Fortunately, as a Tarceva Diva, my Big D GPS expertise is still intact. The more worrisome side effect was the nausea and appetite loss. I didn’t like that at all. I want to wake up each morning looking forward to medium rare prime rib and slabs of sashimi and beer. But no! I had to shove food down my throat just to get nutrition. So Tuesday, Wednesday, and Thursday, I went along with the 2000mg program. By Friday morning, it became clear the clinical trial’s “royalties” needed to talk. The dethroned Queen of Zero Side Effects emailed the Lord of Lung Cancer(LLC).

Following is the actual transcript. Asterisked name protects the innocent.

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SUBJECT: FEELING LIKE CACA

Dear Doc,

Last Tuesday while my fasting glucose was 190, I felt great. Dr. RO* followed the protocol and raised the Metformin another 1000mg inasmuch as my kidney numbers are good.

Since the 2000mg Metformin, I have not felt well. I’ve had the mother of all post-nasal drips that caused me to nauseate, lose all appetite, and my right ear to pop. Maybe the nausea is not just from the post-nasal drip.

My glucose last night before bedtime was 126; fasting glucose this morning 123. Two hours after a meal of protein bar, a plum, a fourth of a banana, and milk toast, the glucose was 226.

Could the Metformin 2000mg be just too much for this dainty little old chick?

Please advise.

Thank you very much.

———-
Hello

Usually metformin causes tummy upset – so nausea could be from this – it wont be the cause of the nose or ear issues though.

Glucose numbers are good on it though.

Are you taking it in AM or PM and 2000 all at once or 1000 twice a day?

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1000 twice a day

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Hmmm.

Lets try an experiment

Take it once a day for a few days and see if you feel better. If so then cautiously reintroduce and see if you feel the same

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Did I understand it?
2000 once a day?

——————

Nope 1000mg once a day (ie drop back to what you did before and see if you feel better – as not sure if metformin or some other bug you have)

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END OF CONVERSATION
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Per LLC’s advice I went back to 1000mg per day, this time all at once in the morning. The effect of the dosage reduction was incredibly immediate. The post-nasal drip abated and my appetite rose from the dead. My husband claimed that I appeared to have felt better right after my contact with the Good Doctor. Of course the contact made me happy because it meant the dosage reduction would be with his blessing. On my own, I have ideas about dosages. But I’m a clinical trial participant, and being a Data Dame – my more glamorous term for trial guinea pig – I have a responsibility to be true to the trial.

I am faithfully recording my glucose readings at crack of dawn and at the end of day and proving so far that the additional 1000mg Metformin is totally an overdose.

Which reminds me, 15 years ago, after suspecting I might have diabetes and reading so much about it, I dabbled on glucose measurements. It was not in me to see a doctor. Just for kicks, I bought a glucose testing thingy along with the strips and the lancets then conducted my own private clinical trials! I took glucose measurements at different times – before eating, after eating, before workouts, after workouts, etc. I’d wolf down a huge slice of cheesecake, then run to my Nordic Trac machine and exercise like crazy. I noticed glucose numbers did go down after physical exercise.

Back to my last visit at the trial site, I believe my husband and I were right that the glucose high but within-normal-range number that morning was due to two days of inactivity. I wonder why the agreeable Dr. RO did not say “yes” to that. Nobody’s perfect, I guess.

So everything is fine so far. Next trial site visit is October 7th. Let’s see what the Good Doctor does to the additional 1000mg of Metformin that we yanked out temporarily.

As the world turns……

My CO-1686 – 6th Month

I’m into my sixth month of participation in the CO-1686 clinical trials and benefitting from the trial drug so far. For four months, I experienced no side effects from the drug, but now with Metformin, I am having post-nasal drip that makes me nauseous. This post-nasal drip is worse than the one that Tarceva gave me. It’s the mother of all post-nasal drips. It makes my right ear pop. It shuts down my appetite. If I fight anything, it’s appetite loss. My Intact Fat Plane and I have a maintenance agreement that I must honor. So I fight and what a fight it has been. I haven’t missed a meal yet! Other than that, I feel great.

Last post, I got so excited over my effortless Metformin weight loss that I donated all my big clothes and bought ones that hug the curves. In my excitement I forgot to report that there was a change in the trial drug pills given to me three weeks ago. The trial honchos gave me 140 pills in 5 bottles instead of the usual 252 pills in 12 bottles. I thought the lesser number of pills was a reward for my good behavior. Not so. They don’t do good behavior in clinical trials. They do parameters. The participant is either in or out of the parameters. If he shows progression, he’s out. If his system can’t handle the side effects, he’s out. So far I’m still in.

What happened was, the trial geniuses manufactured each pill to contain 250mg instead of 125mg. In other words, what used to be a round pill is now a large oval pill. Now I take 3 pills instead of 6.

The trial nose-pullers gave me my new schedule up to the end of the year. It shows bloodletting every three weeks. CTscans will be every NINE WEEKS, up from six weeks.

September 16, 2014 7:00 a.m.

After fasting since 7:00p.m., I surrendered to the bloodsuckers first thing in the morning.

The lab analysis results: Everything within normal range.

11:00 a.m. Consultation

A medical student and a different doctor attended to me this time. They both did the stethoscope motions on me, one at a time. I’ve often thought of bringing my own stethoscope and trying it on the first person who smiles at me, but smiles are a rare commodity in the hospital.

I don’t know where my Onc’s Onc was. He probably went to Scotland to campaign for or against its independence. Who knows? All I know is that his name is still written on my future appointments.

My glucose reading that morning was 190, within the 100-199 normal range, but a spike from 117 last time. The trial protocol says if the glucose is over 160, the Clovis drug dosage must be reduced or the Metformin dosage be increased. The substitute Onc said my kidney data (BUN, Creatinine) are normal, meaning Metformin is not clobbering my kidneys. He raised my Metformin dosage. I have been on 1000mg twice daily since.

I tried to convince the doc wannabe and the real one that my glucose number rose because of zero physical activity last Sunday when I lazed all day. I told them I am usually a mover, always walking, climbing stairs, jumping up and down for no reason. Then add the seven-hour ride to the inactivity on Monday and the glucose number went up. They said “nah,” dismissing my medical expertise just like that. However the real doc said something very interesting. He encouraged me to do all I can to keep moving, stay in shape, and be prepared to live beyond expectations. He went on to say that EFGR’s belong to the first wave of people in a paradigm shift wherein cancer is considered a chronic disease.

Drug Infusion 11:30 a.m.

My trial coordinator brought me my supply of drugs for the next three weeks. A registered nurse (RN), she replaced my first trial coordinator who had transferred to the children’s hospital, where patients have teeth and hair still imbedded in their bodies, and have never heard of bucket lists.

As usual, I was supposed to take my first pills in front of an audience, which would be RN and my husband. RN caught me cutting the horse pills.

“You’re not supposed to cut the pills,” she exclaimed in horror.

“She’s been doing that all along,” blabbered my husband.

She waxed poetic about the whole pill. She said if I had a problem, I should try hiding it in applesauce. Obviously she hasn’t read my blog posts!

Under RN’s watchful eyes, I took the horse pills one excruciating gulp at a time, three times.

Two hours later, RN did the ECG on me to make sure the drug did not send my heart to the races. I was fine. With that, another day at the trial site ended.

Two days after we got home, I received an email from RN: “When you cut the pill in half, did you take both halves and the little pieces? I just want to be sure that you had a complete dosage of the drug.”

I emailed back: “I swallowed both halves and licked the powder on the saucer. I did get the full dose.”

There we have it!

Looking for the Fearless Leader

Two years ago, I nearly lost the lower half of my left lung because the wrong Lord led the Charge of the Light Brigade.

The battle against cancer is like any other battle. To win the battle or minimize damage, the combatants need a good fearless leader – the RIGHT fearless leader. Who should be the lead doctor after a cancer diagnosis?

My cancer journey started with a cough. After drinking mugs of hot ginger tea and prescribing myself antihistamines and cough syrups none of which sent the cough characters packing, I grudgingly accepted the worthlessness of my medical degree from Web College. It was time for professional cough analysts.

When I went back for jury duty in Albuquerque, I visited my Physician’s Assistant (PA), a tall, Hispanic woman, mid-30’s. She went through the stethoscope motions and had my lungs x-rayed.

“I don’t like what I saw in your x-ray,” she said. “Two years ago your lungs looked fine. I’ll order a CTscan.”

The word “CTscan” planted eerie thoughts of cancer to my head. My knees buckled. My PA owned me.

The CTscan image showed a gumball-sized tumor at the bottom of the left lung and several tiny ones in both lungs. My lung image looked like the Milky Way with a small Flying Saucer at the bottom right corner. Not a pretty picture.

With my inner Wonder Woman still in snoring mode, I remained at my PA’s mercy. She sent me for a PETscan. The result came with good news that no part of my body lit up.

“We need to know more about the tumor in your left lung,” My PA continued to terrorize me. “I’ll refer you to a Pulmonologist. He’ll order a biopsy.” That was the last I heard of her.

The Pulmonologist, a handsome – think George Clooney – Haitian man, reviewed the picture of my lungs with me. “I don’t know what that thing is,” he said, pointing to the Flying Saucer.

“No kidding,” I deadpanned. “I dug deep into my casino funds to pay you to tell me that?”

He laughed. “We’ll get that puppy biopsied. I’ll find a Radiologist who can do a video-assisted biopsy.”

Dr. George Clooney found a Radiologist to perform the VATS biopsy. After the biopsy, my husband and I drove back to our California residence. I was as nervous as a whore in church while waiting for biopsy news.

I had just finished eating grilled salmon collar and rice in my kitchen when my cell phone buzzed furiously inside my apron pocket. I picked the cellphone up right away. I did not want the phone to send vibrations to my thigh and other unmentionables. I was also curious it might be Dr. George Clooney. Sure enough it was him.

“You have cancer,” he declared, just like that.

My mind went blank. My mouth opened but no words came out. I don’t remember how the conversation went and ended. Dr. George Clooney had probably had many of those awkward moments with newly diagnosed cancer patients.

My husband and I drove back to Albuquerque and met with Dr. George Clooney. He said he found a Thoracic Surgeon, who agreed to surgically remove the cancerous tumor.

“Your tumor is in a beautiful location,” he swooned. “It’s operable.”

“No cancer tumor is beautiful anywhere,” I chortled. My inner Wonder Woman had awakened during our drive across the Mojave Desert. Plus I had already passed “Nodules 101” at Google University.

My husband, who was then into googling clinical trials, argued hard against surgery but Dr. George Clooney would have none of it. Tired of the septuagenarian, the Haitian Doc pulled me aside and whispered, “Don’t let him talk you out of the surgery. I’ll refer you to a very good Thoracic Surgeon.”

I met the Thoracic Surgeon. The highfallutin butcher was middle-aged, Anglo, and short. I wondered if he would have to stand on a stool to perform surgery on me.

“I will perform the surgery after you’ve passed the Breath Test and the Strength Test.” It sounded like an edict.

I did pass both tests and the nurse declared me “reproducible.” Translation: I was in good shape for surgery. I won’t conk out while my lung is being clamped and snipped under anesthesia. I would live to tell the tale.

Surgery day came. During the procedure, I learned later, the Thoracic Surgeon felt one of the tinier nodules. The gritty feel told him it’s cancer. He stopped the operation immediately and sewed me up, declaring it was senseless to remove a portion of a lung when other nodules still had to be dealt with. He recommended an oncologist at the New Mexico Cancer Center.

We saw an oncologist at the NM Cancer Center and one at the University of New Mexico Cancer Center. I picked the UNM Onc to be my Onc. He immediately put me on Tarceva.

After 100 days on Tarceva, my CTscan showed 80% shrinkage of the Flying Saucer, substantial decrease in size and number of the “too many to count” nodules, and my lungs still intact.

So, what was so wrong that I almost lost half of my left lung? Bad fearless leader! The Pulmonologist, who took the lead, knew the CANCEROUS tumor was operable. He went straight to the Thoracic Surgeon. THE PULMONOLOGIST NEVER ASKED A CANCER SPECIALIST, AN ONCOLOGIST. The Thoracic Surgeon NEVER ASKED THE PULMONOLOGIST TO ASK AN ONCOLOGIST. Neither of them knew about Tarceva or targeted drug therapies.

Knowing what I know now, as soon as I find out the biopsy says cancer, I’d go straight to an Oncologist. I’d ask him if there is targeted therapy for my case. If he says “none”, I’d ask him about clinical trials. If he is clueless, I’d google “university hospitals that conduct clinical trials” and go from there, at all times being my own advocate.

That’s what this “swami” says.

To Tell or Not to Tell

As a pioneer female engineer in the late 60’s and early 70’s, I clawed my way to hell and back before I was recognized as an entity in the United States. As an employee I was always bypassed for promotions in favor of men with or without engineering degrees. In 1983, I said, Enough is enough. I promoted myself to President & CEO; I founded my own engineering company. In general, I believe America has been good to me. As my way of giving back, I hired qualified immigrants who could not otherwise find jobs anywhere because of poor English skills, or who had no U.S. experience. I gave them one career opportunity in the United States. In 2001, I hired “Katia” an architect with tremendous site design experience.

Katia, late 40’s, had made her way from Poland, her home country, to the United States through Greece and a complicated process that included marrying an American citizen. Her extra-thick accent combined with a whispery voice made her extremely difficult to understand. I wished she spoke sign language, but we managed to communicate. A chain smoker, she always had a lit unfiltered Camel dangling from her lips. Ashes overflowed from her ashtrays to her desk in her room. Even if there was no lit cigarette within a mile radius, our conference room would reek Camels the moment Katia strode in. I did not complain. I had zero moral authority on the matter. I was the siren of second-hand smokers at the bar with my husband after office hours. I had a small request – just that Katia made sure her cigarettes did not burn holes on the plans.

One morning, Katia and her husband had an audience with me in my office. Something about that word “audience” rather than “meeting” sends me! At that time, I had just had an overactive parathyroid surgically removed, leaving my lower neck bandaged as if my throat had been slit.

“What happened to you?” Katia’s husband asked in horror.

I deadpanned. “I was in a bar room brawl. I was the only one left standing.” We burst in laughter.

After the chuckles subsided, Katia dropped the bomb: “I have lung cancer.”

I was shocked. Cancer was and still is the shock disease. I did not know what to say except that I gave her permission to take time off for chemo treatments. After they left, I did not think any more about Katia and her cancer. Hey, I was a busy lady. I had payroll to meet, deadlines to beat, and youthful allure to preserve. You know, spa, yoga, acupuncture naps. The boss babe deserved pampering.

One day, I had two early phone calls. Katia called in sick from a hospital. She had been admitted for chemo complications. A phone call from a client followed. He wanted to talk to Katia about a project. I told him the truth. An hour later, in a ruse, Katia phoned me to please come to the hospital to bring her a project file so she could work on it. I happily brought the file, and being a sweet boss, I also brought a sushi lunch we could share bedside. After thanking me for the meal, she did not mince words. She chewed me up and down for telling the client about her cancer. Thank goodness for her ultra-soft voice, her venomous rant would have otherwise been heard in the next township. The ruse part hacked me off. I was inconsolable myself. How dared her! I gave lame justifications, like, “Would you rather that I told him you had a by-pass or an abortion?” Not until my own lung cancer diagnosis eight years later did I realize I had committed what some cancer patients would consider a mortal sin – telling others about a patient’s cancer. If I could apologize to Katia now, I definitely would, even if she does not apologize for the ruse.

Every cancer patient has a preference to tell or not to tell about their cancer. Would there be the same dilemma if the health issue were a painful bunion or acid reflux? Probably not. Cancer has such a stigma attached to it. Everybody is entitled to deal with it in her own way. There is no right reason or wrong reason either to tell or not to tell. Whatever works for the cancer patient is it and must be respected.

When my 40-year-old only child asked me if it was okay for him to tell his best friend that I have cancer, I said, “Sure. Tell anybody you want.” It might have upset me a little if he rented a bull horn and planted himself at the corner of Healthy and Happy to blast the announcement.

I visit a cancer board daily. I’ve been to other sites but decided that one is all I need. I’ve learned a lot from it and I give back to the community through it. I share my wealth of personal and professional experiences with cancer patients and caregivers who want to be uplifted through humor and optimistic outlook. Laughter must go on in spite of cancer. That’s why I blog and make it accessible to anyone who appreciates positivity.

So, to tell or not to tell? My choice is to tell.

How about you?