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 by date entries, sans the roller coaster of emotions and periodic scanxiety. If you’d like to read my journey in story form, it’s in my blog post titled A Lung Cancer Epatient Story.
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 55 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-cm 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 either unlikely to benefit from or 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 collarbone 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:
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 will 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.
Update August 13, 2013:
PET-CT scans for April, June, and August 2013 (as well as April brain MRI) still show No Evidence of Disease. Woohoo! Having completed 10 cycles on Xalkori without progression, I now will go to Denver at 8-week instead of 4-week intervals, and have labs drawn at my home clinic between Denver visits.
Update December 3, 2013:
PET-CT scan still shows No Evidence of Disease. October 2013 brain MRI is clear as well. I’ll ride with NED as long as I can. It’s a bit disheartening that the AP26113 clinical trial for ROS1 has been closed–I now have no other ROS1 clinical trial I can enter when Xalkori stops working–but Alimta is still an option for follow-on treatment. The longer I can stay NED, the greater the chance that a new treatment option will become available.
Update January 28, 2014:
CT scan still shows NED. Could not have PET-CT scan this visit due to insurance approval snafu. Hopefully in another 8 weeks I’ll have a PET-CT again. Given my cancer grew so aggressively in previous recurrences, I think PET technology might catch earlier than a CT scan. I stopped taking gabapentin; although my sleep is now screwed up again, the edema has gone down. Some days I can skip both the Lasix and compression stockings and my legs are still comfortable.
Update March 25, 2014:
PET-CT still shows NED, plus brain MRI is clear too. Switched to Ambien to help with sleep.
Update April 25, 2014:
Had another brain MRI after 2 weeks of headaches. Fortunately, my brain is still unremarkable.
Update July 15, 2014:
Still dancing with NED–this Xalkori is great stuff! Stopped taking Ambien for sleep–apparently it make me anxious. I sleep OK as long as I exercise.
Update September 9, 2014:
20 months NED on Xalkori for ROS1 NSCLC. PET-CT and brain MRI are both clear. Went back on Ambien to help with sleep, seems to be working.
Update February 2015:
Still NED! However, I now have a pulmonary embolism (PE), which is a blood clot in my pulmonary artery. Evidence of this clot can be seen on my PET-CT scans since July 2014, but it wasn’t fully diagnosed until December 2014 because it’s so subtle. For all we know, it’s just a pile of all the fibrin sheaths knocked off my port catheter using Cathflow over the past three years. The PE partially explains my shortness of breath on exertion. I’m now on Warfarin as a blood thinner, and will probably be on blood thinners for the rest of my life.
Update June 23, 2015:
Still NED! I did injure my left shoulder at the end of May (see my blog about Pavement Diving Is Not My Best Event). The bone bruising was worse than it might have been if I weren’t on blood thinners, but it’s healing. I get to have my left arm in a sling for four weeks (or longer), and will have physical therapy. Still, a minor bump in the road compared to cancer.
Update Oct 5, 2015:
Still NED! Turns out I actually broke my shoulder back in May (cracked the socket and broke off a chip), but physical therapy has given back my full range of motion. I’m now working on rebuilding strength. Probably won’t be able to sleep on my left side ever again, but I might be able to play wallyball again someday, if I’m strong enough to avoid injuring either arm (my right shoulder is also weak, due to radiation of the right brachial plexus in 2012).
Update Dec 2, 2015:
Still NED. Exploring ways to deal with fatigue.
Update Nov 6, 2017:
As of today, I’m five years on my crizotinib clinical trial, and still no evidence of disease! Yay for targeted therapy!