Clean for Another Six Weeks

After a few missteps — see my blog post “A Leaf on the Wind” — today I learned the MRIs of both my lumbar spine and my pelvis show no evidence of metastatic disease. Woohoo!

Now I can focus on enjoying the spectacular Washington weather (it’s over 80 degrees!) and breathe easy for six more weeks, when I have the next PET/CT scan.

I do intend to follow up with my primary care doctor about the significant narrowing in my spine near the stable L5-S1 displacement, and the pain in the left ischium area, which may be related to a torn hamstring.

Funny how health issues that three years ago would be major concerns now seem relatively minor when compared to metastatic cancer. I’m not even sure I’d be considered a candidate for surgical repairs of the spine or hamstring today.

The Obligatory Feline Photo

Two of my joys in life are orange tabbies Admiral Dufus and General Nuisance. Admiral simply exudes personality, and General is 16 pounds of love. They rarely fail to cheer me.

But they do occasionally fail.


My Cats

May the Fourth Be With You

OK, it’s a geek thing, a reference to Star Wars.  I love space. I love science. I love science fiction.  But the concept of Star Wars has an even bigger meaning to me now as a metastatic cancer patient.

Star Wars represents a future — a dream — where one person can make a difference, where medicine is advanced enough to replace damaged body parts, where people work together to accomplish the impossible. That’s a hopeful vision for someone with advanced cancer.

Maybe lung cancer research will get the funding it needs to work miracles.  Maybe researchers will find a new treatment that works better for me before my current treatment fails.   Maybe a simple early detection method or (dare I say it?) a cure for lung cancer will arise in my lifetime.

My lung tumor was discovered two years ago today. I need all the power of the fourth I can get.

A Leaf on the WInd

As many before me have noted, cancer is a roller coaster. But sometimes the sudden ups and downs are not of cancer’s making.

Yesterday the Puget Sound region started a span of spectacular weather. It’s hard to beat a mild, sunny day presiding over deep blue water, green trees, snowy Olympic Mountains and high-definition Mount Rainier.

I drove to Seattle to visit my Virginia Mason lung cancer team in great spirits. They look forward to learning more about ROS1 and Xalkori clinical trials, and I look forward to giving them good news from a stage IV lung cancer patient. I planned to discuss my clean scan results from University of Colorado Hospital, along with some pesky side effects of past and present treatments.

With my pulmonologist, I mentioned my lingering radiation pneumonitis (lung inflammation) and hot spots noted on the PET/CT report. He pulled up the scan on his monitor for review. He started at my collarbone to confirm the area of my last recurrence showed no activity, then scrolled down through the layers of images to check my lungs. He was scrolling to the last images to check the hot spot noted on my left ischium (at the bottom of my pelvis, left side) when I heard, “What was that?” He scrolled back a few frames, and pointed to the screen.

In my spine was another hot spot. This one had NOT been noted on the PET/CT report. Since lung cancer is known to metastasize to bones and the spine (among other places), this concerned him. He consulted by phone with a clinic radiologist, who viewed the scan while they talked. The CT portion of the scan could not confirm the presence of a tumor. An MRI could give a clearer picture of structure with better resolution. The physician’s assistant scheduled my MRI at my neighborhood clinic for 8 AM next morning, Friday, with a follow-up visit the following Monday.

And this started out to be such a beautiful spring day.

I began the 30-mile drive home increasingly numb. I had thought I was in the clear for another two months, until the next PET/CT scan. When I have an impending bi-monthly scan to check for cancer recurrence, I’m prepared for bad news should it occur. But today was supposed to be a happy day of celebration with my team. I wasn’t expecting any BAD news.

As the evening wore on, I became a mass of mixed feelings. My confidence was shaken. I depend on radiologists, who are trained to analyze scans, to determine whether my cancer is still under control. Scans determine if my clinical trial drug is working. I know doctors aren’t perfect, but if a radiologist can miss a possible recurrence, where does that leave me?

I emailed my Colorado oncologist to tell him we’d found another hot spot, and asked what he wanted me to do to keep him in the loop. He is my primary oncologist and calls the shots on my treatment should I have a recurrence. He said he didn’t mind if I had the MRI in Seattle, but send him the scan and the results ASAP.

I then emailed my Seattle oncologist to request that he have a Virginia Mason radiologist review my UCH brain MRI, just for my reassurance. He replied promptly that he would do so and email me the results on Friday.

By the time I went to bed Thursday evening, I was depressed. I felt like I did when my first recurrence was discovered. I couldn’t relax. I ended up spending another hour or two searching the Internet and reading journal articles about prognosis and treatment of spinal mets in lung cancer patients (not a relaxing subject, I must admit). I also read how signs of disease are missed on radiology scans. When I did finally fall asleep, I dreamt of loss.

This morning I had my MRI. The narrow tunnel of the scanner felt especially confining for the 20 minutes I was inside. Afterwards I asked the tech if the scan covered both the lumbar area (where the spine hotspot was) and my ischium. He said no, the doctor only wanted the lumbar scan. Oh, OK, I thought. Maybe the pulmonologist wasn’t concerned about the ischium after all.

I muddled through the day until I could pick up the CD and radiology report at 3 PM. I took a deep breath, unfolded the scan report, and immediately smiled.

No evidence of metastatic disease. **Whew**

I called my pulmonologist’s office and asked if I could cancel my Monday appointment, since we had nothing to discuss. His PA called back about an hour later, but not with the response I expected. The doctor DID want to see the ischium in the scan. I have to do the MRI again Monday morning.

Instant replay. **Deep breath**

To borrow from the movie Serenity, “I am a leaf on the wind ….” The speaker, Wash, was a spaceship pilot who successfully threaded an impossibly challenging, fast-moving labyrinth to arrive safely in port.

Wash had a spike rammed through his gut about a minute after he landed.

Coming Out of the Storm

Early this week I traveled to Denver for my April trial check-in and scans. In addition to the bimonthly PET-CT scan, I was scheduled for my semi-annual brain MRI to see if my lung cancer had spread to the brain. I had been having more headaches and neurological issues over the preceeding month, and I left for Denver apprehensive about what the scans might find.

I had my scans Monday April 22 (read a summary of my scan day), but had to wait for my Tuesday appointment with the oncologist to learn the results of the scan. While I kept busy Monday evening visiting with my nephew and his wife, and helping my son via phone with his geology assignment, my scanxiety hovered quietly in the background. However, it made its presence known by waking me several times during the night, and ensuring my eyes flew open Tuesday at 4 AM Denver time (3 AM by my body clock). I gave up on the idea of sleep around 7 AM and rose early to find this awaiting me.

 

My rental car was under three inches of powder snow, and white stuff was still falling. Denver’s had a snowstorm every time I’ve visited it for the past four months. I checked the local weather on my iPad. Although Denver is well-prepared to handle snow, the roads weren’t cleared yet, and the freeways were gridlocked by accidents.

I skipped breakfast and headed into the belated winter chill. After brushing snow from the windows and doors, I started the car, turned the heat and defroster to max, and connected the GPS to its traffic cable. The suggested route avoided freeways, offering side streets for the 22-mile trek.

On the 90-minute crawl to the University of Colorado Cancer Center, my mind wandered to what ifs: What if they did find a brain tumor? Then the light would change, and the demands of the drive would yank me back to the present. At the next back-up, my thoughts wandered again: What if my cancer has spread elsewhere? What if I have to leave the trial? What if I have to go elsewhere for the next trial?

It was indeed a long drive.

I arrived at UCCC with just enough time to grab a quick breakfast at the cafe and hustle up to my appointment. I was on time, but other patients delayed by the snowy streets created a 45-minute wait for the oncologist. I was shuffling back and forth between the lab results on my UCCC iPhone app and previous months’ lab results on my iPad when the doctor walked in.

His big smile said it all. “I’m so glad to be able to give good news.”

Both my scans were clean. I was still dancing with NED (No Evidence of Disease).

By the time I left the clinic, the streets were bare and dry, and the sun blazed bright. The snow had simply evaporated, along with all my fears. I plugged my phone into the car’s stereo and sang along with the Eagles all the way to my nephew’s house.

Even when mind storms make the road look bleak, there’s eventually sunshine to be found.

On the flight home the next day, I looked out the window into the unusually clear skies over Washington and saw the bright side of snow.

 

Yep, the scanxiety is cured.

The Hazards of Trial Travels

Why a Clinic Visit Takes All Day

One thing I learned early in this cancer journey: Never schedule ANYTHING else on a clinic day.

Why? Because cancer clinic appointments have a way of expanding to fill the time available (or more).

Today is a good example. I had two appointments scheduled at the University of Colorado Cancer Clinic today, a PET/CT scan at 9:30 AM, and a brain MRI at 11 AM. I am not allowed to eat anything for 4 hours before the first appointment. I should be done by 11:45 AM. Two hours and fifteen minutes of clinic time total. Pretty straightforward, right?

Not in the slightest.

I’m to report 15 minutes early the PET/CT scan. I can’t predict Denver’s morning rush hour congestion, so I leave my nephew’s house at 8 AM, aiming to arrive at UCCC at 9 AM, which leaves time to park, walk into the clinic, and stand in line to register. I arrive at the radiology registration desk at 8:55 AM.

While standing in line, I realize I don’t have a water bottle. This is an occasional side effect of flying to a distant clinic for care–TSA doesn’t allow liquids to pass through airport security, so I usually buy a water bottle in the airport. Cancer patients need to drink lots of water, especially when taking diuretics. This flight, however, I accidentally left my empty bottle on the plane. I remind myself to watch for water stations while at the clinic.

I check in at Radiology, then go to the nurse’s station to have my chest port accessed, which means they insert a specialized needle into my port so I can receive IV tracer and contrast during my scans. I finish that step on time.

Then Murphy takes over. The PET/CT department is running 15 minutes late. I get my blood sugar tested; it’s higher than normal (123) but still acceptable. However, my March lab results showed my creatinine (a measure of kidney health) was too high; I may not be able to get the CT contrast because it’s hard on the kidneys. This would be a disappointment, since the contrast makes tumors show up better on the scan.

The tech takes a blood sample for creatinine testing, gives me the injection of radioactive glucose (the tracer used for the PET scan), and has me rest in a dark, quiet room for an hour. Later she tells me my creatinine was low enough to allow contrast. **phew** I doze a bit.

When the tech gets me up for the test, I’m supposed to void my bladder to clear excess radioactive tracer. Whoops! THAT’S why I should have guzzled a quart of water early this morning. Off we go for the 45-minute scan.

The tech gets me up from the scanning machine, reminds me to drink plenty of water to flush out the tracer and contrast, and tells me the MRI folks are running an hour late. She suggests I go get some lunch. I happily comply. I try to find bottled water, but the cafeteria doesn’t carry it. I eat in the nearby UCH Outpatient cafeteria and use the free UCH wireless connection to check email.

Back to Radiology an hour later. I find a water cooler in the waiting area and down two cups of water before the MRI tech comes to tell me they’re running even later than before. Despite that, he takes me back to the waiting area and tries to convince me to change into one of their gowns. I tell him I carefully chose my clothing to ensure I had no metal on me anywhere, and these clothes keep me warmer than a gown. While waiting, I finally manage to void my bladder a little and stash my stuff in one of the lockers–no sense exposing my iPad, phone, and credit cards to intense magnetic fields in the MRI room. Another tech comes to collect me and again tries to coax me into a gown. I again explain why I chose these clothes. She seems mollified. Off we go to the scanner.

I get the usual foam earplugs and noise-cancelling headphones with a limited selection of music. The bed slides into the scanner, and I discover this machine has a smaller interior than the scanners back home at Virginia Mason in Seattle. My elbow bones are hard against the sides. The dry Denver air makes my nose plug up, so I breathe through an open mouth, which quickly becomes parched. Halfway through the twenty-minute scan, the tech taps my leg to let me know she’s administering the contrast. I adjust my screaming elbow slightly, hoping I succeed in keeping my head still. I don’t want to ruin the images by moving and have to do this scan again.

The scan ends. The tech says I kept my held sufficiently still. **phew** I’m directed to the nurse so she can deaccess my port (a fancy way to say “remove the needle”). Uh oh. She can’t draw blood from the port. The tracer and contrast have probably clogged it. Not an uncommon occurrence, but this nurse’s station is not equipped to inject the “drano” (OK, it’s called cathflow, or TPA) into my port to clear the line. I’ll have to go back to the cancer center lab for the TPA.

On my way out of radiology, I remember I need to order the CDs of today’s scans to take back to my home clinic. I detour and spend 10 minutes at the file room filling out forms.

En route to the cancer center lab, I remember I need more water, and go looking for a refillable water bottle. I check the lobby coffee shop, but they’re out. Maybe I can find a vending machine. I check in the pharmacy. Nope, nothing here. But I remember I need to pick up my prescription refill. I wait in line 10 minutes before I’m called to the counter. My transaction takes another 5 minutes.

I discover the cafeteria has an Aquafina vending machine. It doesn’t accept my credit card. After 15 minutes of scouring fine print, I learn the machine has a slot for $1 and $5 bills. I go to the cashier, break a $10 into two $5s, and go back to the vending machine. The feeder won’t accept the bills. No water here. Onwards.

I get to the cancer center lab, explain that my port clogged after this morning’s scans, and ask to get TPA from a nurse. The receptionist asks if I have an appointment. Yes, I have one in the morning for lab draws. However, I need my port cleared now. She doesn’t know how to accomplish this without a scheduled appointment for TPA. She asks who my scheduler is. I tell her R*** is my scheduler, but she doesn’t know how to contact R***. She leads me to the desk of a scheduler named S***, but S*** has left on a personal emergency. She leads me to S***’s supervisor, who says B*** can do it. But the receptionist decides instead to lead me to the cancer clinic desk and ask them to make me an appointment. The desk calls one of the oncologists to order an appointment. I’m told to have a seat in the lab waiting area until the oncologist comes out. Ten minutes later, the oncologist comes out. She says I don’t need an oncology appointment, I need a lab appointment, and directs the receptionist to make a lab appointment to get TPA. This evidently breaks the logjam. Ten minutes later, a nurse calls me in to get the TPA.

We discuss the best approach to clearing the clot, and decide to inject the TPA and wait 30 minutes to see if that clears the port (as opposed to leaving the TPA in the port overnight). I get the TPA injection and sit in the lab’s lobby for another 30 minutes.

Right on time, the nurse calls me back to remove the TPA. It worked! My port is cleared.

I then remember tomorrow’s AM commute is projected to be a mess due to snow. I’m supposed to be back in the lab early tomorrow morning for blood draws. I mention to the nurse that no one else is using lab services at the moment, and that my appointment for lab draws tomorrow will be at 9 AM, their busiest time. The nurse agrees drawing my labs now is a good idea. She goes to her computer station to look up which labs to draw. The lab orders have not been entered yet. Another nurse places a call to my oncologist (who happens to be in today) to request lab orders. He calls back within five minutes, and the orders are entered. The nurse takes about five minutes to draw the lab samples.

She mentions that I also need to give a urine sample. I can’t. ANOTHER reason I should have been drinking water. I thank them for their efforts, and leave with my urine sample kit to continue my search for a water bottle. I hear the inpatient cafeteria two buildings away should have one.

On my way to that cafeteria, I notice the lobby coffee shop now does have water. I wait in line and FINALLY get my 20-oz refillable water bottle. I also order coffee. I realize a split second later that I have to void my bladder. I head to the nearest restroom. In the stall, I remember I could collect my urine sample now. I pluck the sample bag out of my tote, then notice the nurse did not give me the required wipe to use for a clean catch. I dig through my purse and find a Wet Wipe, and produce my urine sample. I drop off the sample at the radiology lab (saving me the walk back to the cancer center lab), grab my cooling coffee from the coffee stand, and go sit down in the entry lobby to drink water. It tastes really good. I can tell from my drying hands that I need it.

In the lobby, my phone finally has enough bars to download voicemail and tell me I missed a call from my husband back in Seattle. I call him and we chat about who will call whom tomorrow after I get my scan results from the doctor, and when my son and I will talk this evening to discuss his Geology assignment. When I hang up, my phone grumps that it only has 10% battery power left. I pack up, button my coat, put on my hat and head into the blowing snow for a two-block walk to my car.

At the car, I plug my phone into the charger, program the GPS for my nephew’s house, drink half the bottle of water, and get moving.

It’s 3:45 PM. Rush hour traffic. I arrive at my nephew’s house at 5 PM.

And that’s why a clinic visit takes all day. Aren’t you glad you asked?

Braving End of the Tunnel Blues

I’m generally a upbeat person. I try to find something positive in each day, even when the only positive I can find is that I’m still breathing.

But every now and then, lung cancer messes with my head. It’s hard to completely eliminate the memory of an October 2011 PET scan image showing a hot spot outside of my chest, my pulmonologist calling after the biopsy to say my lung cancer had metastasized, my oncologist apologetically estimating I had perhaps two years to live. (Granted, he only gave me a prognosis because I pressed him for one. He has since happily recanted.)

I’ve already had two recurrences, both found just weeks after the end of a chemo regimen. I will be in treatment for the rest of my life. My current targeted therapy has eventually failed for everyone who’s taken it. Chemo eventually stops working because the cancer develops resistance to the drug.

Every two months I have another scan to see if the cancer has progressed yet. My cancer is aggressive and smart. When a treatment thwarts its goal of world domination, it mutates and renews its efforts. And the next treatment option may or may not be effective.

Every now and then, these facts overwhelm me, and I cannot stay positive.

Many people who experience near-death report that when they died, they saw a tunnel, walked through it, and emerged into the light before they were brought back to life.

Every now and then, the facts overwhelm me, and I see that tunnel, or at least this end of it. I become acutely aware of what cancer has stolen from me, and how little time I might have left. I start thinking of important tasks I want to finish before I die, of family I will leave behind, of experiences I will never have again.

I call it “End of the Tunnel Blues.”

When it hits, I usually brave it in silence. Few people want to dwell on my possible impending demise. Some are gobsmacked and uncertain how to feel or respond. Others feel compelled to make me feel better. It seems the only people comfortable talking about such things are those who have seen their own tunnel. Other incurable cancer patients like my friend Jay Lake know.

The feeling usually leaves after an hour or two, but each episode leaves a mark on my soul.

If you have a friend facing a life-threatening or incurable illness, they may have periods of the End of the Tunnel Blues. If they mention it to you, try not to freak out. It’s normal. Just listen and, if you can, let them know you’re honored they trust you enough to share their deepest feelings with you.

Targeted Therapies for Lung Cancer: An Overview

Targeted therapies are cancer drugs (usually pills) that target and inhibit specific genetic abnormalities in cancer tumors. Over 200 known genetic abnormalities are suspected to occur in different kinds of cancer tumors. These are not the same genes that indicate whether you’re at risk of getting cancer. These are genetic changes that occurred in a body’s cells at some point and caused those cells to become a cancerous tumor.

For lung cancer patients, at least fifteen abnormal genes can be identified by molecular profiling of lung cancer tumor tissue. Molecular profiling examines tumor tissue for specific proteins made by these abnormal genes. More genetic abnormalities in cancer tumors can be found by full genomic sequencing, but that’s a post for another day.

Two abnormal genes in lung cancer currently have targeted treatments approved by the FDA. Both of them are found mostly in non small cell lung cancer (NSCLC) with the adenocarcinoma cell type:
— EGFR mutations (approximately 10% of NSCLC tumors in USA)
— ALK fusions (3-7% of NSCLC tumors)
In the ALK fusion, the ALK gene isn’t mutated, but is fused with another gene in the DNA strand. However, some sources call every genetic abnormality in cancer tumors a “mutation” for simplicity.

The 2013 NCCN Guidelines for oncologists, which are the gold standard of cancer treatment in the USA, now state all patients diagnosed with NSCLC adenocarcinoma be routinely tested for an EGFR, which is targeted by the drug Tarceva, and ALK, which is targeted by the drug Xalkori.

However, NCCN guidelines are having trouble keeping up with the fast pace of research and drug development for cancers. Xalkori was approved by the FDA for ALK-positive NSCLC in August 2011 under its expedited review program, but it took over a year for the guidelines to direct oncologists to test advance stage NSCLC patients for ALK.

My genetic abnormality (y’all were certain I had one, right?) is a ROS1 rearrangement. Rather than mutating, ROS1 pairs with another gene, but it’s something of a slut and can pair with more than one gene to cause lung cancer. ROS1 was first announced in a medical journal article in January 2012 and doesn’t have an FDA- approved targeted treatment yet. However, Xalkori (which is approved for ALK-positive patients) is working well for ROS1ers in our clinical trial, which began in 2012. Some oncologists are starting to test never smoker NSCLC patients for ROS1.

EGFR, ALK, ROS1 are examples of “driver mutations.” A driver mutation contributes to a tumor’s progression by causing a tumor to ignore the programmed cell death inherent in normal cells, continue growing even when it crowds into other tissues, and spread tumor seeds into the bloodstream and lymphatic system. Darned inconsiderate, if you ask me.

You can see why driver mutations make such attractive targets for new cancer drugs: if you can inhibit or eliminate the driver mutation, you can stop the cancer.

Targeted drugs for several more lung cancer mutations are currently in clinical trials for NSCLC and small cell lung cancer (SCLC).

How Not to Say the Wrong Thing

When a friend or family member is dealing with a serious health issue like dementia or cancer, we often don’t know what to say or how to react. We might want to tell them how scared their illness makes us feel, or avoid talking about the elephant in the room altogether, only to see our words make the patient or family members uncomfortable.

Here’s a nice LA Times article about How Not to Say the Wrong Thing. As a cancer patient and family member of elders who had dementia, I heartily endorse these guidelines.

Here’s another perspective, focused on lung cancer. 10 Things Not to Say to Someone With Lung Cancer