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.

it snowed overnight in Denver

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.

Mount Rainier from the air

Yep, the scanxiety is cured.

The Hazards of Trial Travels

I've been flying between Seattle (Washington) and Denver (Colorado) once or twice a month since late October to participate in a Phase I lung cancer clinical trial. Flying frequently exposes lung cancer trial patients to all sorts of hazards. The most obvious, I suppose, are the airborne respiratory viruses which spread so easily in cramped TSA security lines and airline cabins. Another is the long walk from security to the gate, which can tax those of us with compromised lung function. And travel for a cancer trial is inherently stressful, with embedded concerns about time away from family and home, negotiating an unfamiliar city, and the possibility of side effects occurring when you're hundreds or thousands of miles away from your oncologist.

But these hazards pale in the face of the unknowable threat that looms over the entire flight and infuses dread in the hearts of all airline patrons, no matter how healthy.

I'm talking about seat partners.

Please don't misunderstand me. I've sat next to pleasant SPs during trial travel: college students going home for winter break who slept through everything, business people occupied with a project, even some articulate folks knowledgeable in a subject of interest to both of us (I'm actually sorry to part company with them). And once, my SP was a Harvey-style pooka with laryngitis, who I especially appreciated after a sleep-deprived week.

Other flights are more ... interesting.

There was the 9-year-old boy traveling alone, a creative and verbal lad, who explored scenarios that might cause a plane to crash.

SP: "What if two guys had a sword fight in the aisle and broke a window?"
Me: "That's why we can't carry pointy objects onto airplanes."
SP: "What if the pilot forgets where the airport is?"
Me: "The airplane has a GPS system that tells her where the airport is."
SP: "What if the GPS fails?"
Me: "She has a big book with maps of all the airports as backup."
SP: "What if she forgets how to read?"
Me: "So what do you want to drink?"

I received a free glass of wine from the cabin crew on that flight.

On another trip, a science geek occupied the middle seat next to my aisle seat. I would have loved to chat with him, but our window SP babbled nonstop about her hobbies, grandchildren, and assorted afflicted body parts. I empathized with him, silently.

The most memorable SP to date was a twenty-something conspiracy theorist who shared his wisdom while crossing three Western states (Western states are very wide). I learned so much from this young man. Big corporations are suppressing cheap clean energy (engines can run on water). Congress wants the US economy to fail. Our government is hiding the cure for cancer – never mind that cancer is not just one disease, the cure exists. Also, perpetual motion machines work. Being an engineer by training, I couldn’t resist the urge to correct that last misconception. I set about explaining entropy and physics. I managed to emit all of three sentences before I was corrected. I was surprised to learn we don’t really understand physics yet. But we will Someday, when we know The Truth. And there is only one Truth.

As I was told more than once on that flight, all we need is The Truth.

I'd settle for a good set of noise-cancelling headphones.

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

My Lung Cancer Journey To Date

Since most people reading this will not know my lung cancer history, I thought I’d put it in a post to help you see the ups and downs of living with lung cancer. Here’s the Readers Digest version, sans the roller coaster of scanxiety every 2-3 months.

In early 2011, I was in good physical shape, about 30 pounds overweight, eating healthy and exercising regularly. After tolerating a nagging, slight cough for a few months, I visited my primary care doctor at Virginia Mason Seattle in early March 2011 and went home with a Z-pak of antibiotics. A few weeks later, I along with my husband and son returned from a trip abroad with respiratory infections. The guys recovered in a couple of weeks. I kept coughing up thick green gunk. When I coughed up blood, I went back to the doctor, who gave me another Z-pak. After another few weeks, I was still coughing heavily, so the doctor ordered a chest x-ray. Before I’d left the lab, she ordered a CT scan. By the time I arrived home from the clinic (a 10-minute drive), she called me. The radiologist saw a mass in my lung that looked like a carcinoma. Two days later, a Friday, I saw a pulmonologist (lung specialist) who performed a diagnostic bronchoscopy. I had a very anxious weekend waiting for the pathology results. The pulmonologist called me Tuesday evening, May 10, 2011, with the news. I was 56 and I had lung cancer.

I’d never smoked anything except a salmon, never lived with smokers except in a college dorm, never worked in a heavy smoking environment (although I did grow up downwind of the ASARCO copper smelter in Tacoma, which belched arsenic and lead into the air for years).

Subsequent scans and tests over a two-week period rendered a diagnosis of stage IIIA non-small-cell adenocarcinoma. I had a 7-inch tumor in my lower left lung, two hot hilar lymph nodes in the left lung, and one hot subcarinal lymph node between my lungs at the bottom of my windpipe. All biopsies showed poorly differentiated cells, which indicates an aggressive cancer. At diagnosis I had severe pneumonia; turns out the interior of my tumor had died off and become colonized by bacteria that took the University of Washington three weeks to identify. Heaven forbid I should be a boring, vanilla cancer patient!

At this point my white blood cell count was in the mid 20s (normal is 6-10). I was unable to have surgery due to the pneumonia and lots of inflammation between my lungs (even an extra artery there, presumably feeding the cancer). I would have required a pneumonectomy (complete removal of my left lung), and the surgeon thought I wouldn’t heal properly.

However, the oncologist said he considered me curable. After 10 days in the hospital and weeks of IV antibiotics, I recovered enough from pneumonia to get 33 daily radiation treatments (66 Grays total) concurrent with 6 weekly chemo doses (both carboplatin and paclitaxel) followed by one full chemo dose. I couldn’t have the second planned full chemo dose because my blood values tanked in addition to other side effects. Treatment finished in early August 2011, though I stayed on oral antibiotics to keep the pneumonia at bay.

Update Oct 2011:
My first post-treatment CAT scan in late September 2011 showed the lymph nodes were almost completely resolved, and the tumor had shrunk by over 90%! I was feeling good, the CAT scan was good … I thought I had a great chance at a cure.

In the next two weeks, I underwent several tests (15 appointments in 16 days) to determine if I was healthy enough to have the lung removed. Lung surgery isn’t often done after curative chemo and radiation treatment, because the radiation scars the lungs and complicates the operation and healing. One of the tests was a PET scan, which found a hot spot on my right front collarbone. A few days later two lymph nodes were removed in an open biopsy and found to be more of the same cancer. So now I’m stage IV (borderline IIIB). No lung surgery for me–no point undergoing a risky surgery with a tough recovery when it wouldn’t cure me.

Late October 2011:
Developed shortness of breath. Pulmonologist diagnosed me with radiation pneumonitis and put me on oral prednisone, a steroid. I’d be on it for most of the next year.

Update Dec 2011:
A new tumor grew by my right collarbone in the area where the nodes were removed. It’s an ugly thing that grew from nothing to about 3 inches long and 1.5 inches wide in less than 2 months–very aggressive. My pulmonologist and oncologist say they’ve never seen anything grow so fast. The Lung Cancer Mutation Consortium Protocol clinical trial says I have none of the 10 mutations on their panel, which means I’m unlikely to benefit from or are not eligible for any targeted therapies.
We’re going to shrink it with Alimta-Avastin chemo, then decide on next steps. I had a port installed (on the left side, in case we decide to radiate the tumor later).

Update January 2012:
The Alimta-Avastin started shrinking the tumor by the 10th day of my first round. One good thing about fast-growing tumors is that they suck up chemo fast, too. However, I lost my voice and the shortness of breath came back. Increased the prednisone. I understand Roid Rage better now.

Update June 2012:
Now, after 6 rounds of chemo over 5 months, CT and brain MRI scans say all my original tumors are gone, the aggressive tumor on my right collarbone shrank over 90% to 1.7×1.5 cm, and no new tumors have appeared. I’m glad to be off the chemo; towards the end, I felt like I continually had the flu. My team figures if any new mets of this aggressive cancer were going to appear, they would have shown up by now. We’ve decided to treat this one remaining tumor as an oligo-recurrence and go for a possible cure. I’ve started radiation therapy that will last 6-7 weeks and hopefully knock this cancer out for good!

Update Sep 16, 2012:
Completed radiation over the tumor bed on July 31 (28 treatments totalling about 57 Grays). The skin on my neck and by my collarbone was raw by the end, but healed quickly. Five weeks later, the skin on the back of my shoulder just looks lightly tanned, and the skin in front is pink and a tad tender. I can still feel a lump where the tumor was, but it’s just scar tissue — my Sep 13 PET/CT scan shows no activity near my collarbone. However, I have a new nodule suspicious for cancer in my upper right lobe (2×2 cm, SUV of 7), and a 7mm nodule in my lower right lobe (too small to biopsy). So, more procedures: CT scan, brain MRI, and a third bronchoscopy for an URL biopsy. This bronchoscopy will be done with electromagnetic navigation similar to GPS technology because it can’t be accessed by other methods. I’m also planning to restart chemo with Alimta only. As my onc says, “Your cancer has never progressed while you’re on chemo.” At least I was able to finally stop the oral Augmentin after 16 months.

Update Sep 17, 2012:
While visiting family in Denver, I was able to meet with Dr. Bunn of the LCMC (which ran molecular testing for 10 mutations on my recurrent tumor last fall). He told me the University of Colorado at Denver now tested for 4 new mutations, including ROS. They will test my remaining slides for ROS and RET–Dr. Bunn says I have a 10-20% chance of having one of those mutations.

Update Sep 24, 2012:
Had my electromagnetic navigation bronchoscopy today. My pulmonologist said he got a good sampling of the new nodule but couldn’t find any cancer cells. Could I be NED?

Update Sep 25, 2012:
Dr. Bunn emailed me: I have “an impressive ROS1 rearrangement”! They have an opening in a Xalkori trial for me, if I want it. Xalkori is twice-daily pill that targets only cells that have the ROS1 mutation, so it has substantially fewer side effects than chemo.

Update Sep 26, 2012:
AM: Oncologist called, excited by ROS1 news. He’s still suspicious the new nodule is cancer; if it is, he agrees I should enter the ROS1 trial rather that restart Alimta. Dr. Bunn says I can join the trial later if I don’t have active cancer now.
PM: Pulmonologist called–he took my case to the Tumor Board today (surprise!). Lots of discussion but consensus says the biopsied nodule is radiation changes. I restart 15 mg prednisone tomorrow. This is GOOD news, but not the convincing declaration of NED I’d prefer. In a month I have a CT which will hopefully determine if the URL nodule is shrinking (probably pneumonitis) or growing (BOOP or cancer?), and whether LRL nodule is growing (might need another biopsy).

Update Oct 24, 2012
Chest CT shows LRL nodule grew nearly 50% from 9×7 mm to 13×10 mm. I need to restart treatment–either a trial, or Alimta. I’ll call the University of Colorado Cancer Center (UCCC) in Denver tomorrow to enroll in their ROS1 crizotinib trial. Bright spot: Prednisone did not affect URL inflammation, so I get to ramp down over 3 weeks (yay).

Update November 6, 2012:
Last week I flew to Denver to get screened for the ROS1 clinical trial. Today I learned I have been accepted into the trial! Tomorrow, bright and early, I will be at UCCC to get my first dose of Xalkori (also known as crizotinib).

Update January 2, 2013:
The UCCC PET/CT scan, done 8 weeks after starting Xalkori, showed one of my two lung nodules is gone, the other is shrinking, and no new hot spots have popped up. Xalkori is working! The side effects (edema and constipation) are far easier than chemo. Hoping this drug will keep working for a LONG time.

Update January 11, 2013:
My oncologist at Virginia Mason in Seattle had my PET/CT read by their radiologist. The VM verdict is No Evidence of Disease. Woohoo! This is my first clean scan since my diagnosis.

Update February 26, 2013:
Yesterday’s PET/CT scan again showed No Evidence of Disease. Still battling significant edema and now joint pain, especially in my hands, but my energy is increasing. I’ve added regular acupuncture and lymphatic drainage massage to my therapies.