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.
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.
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).
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.
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!
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.
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.
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?
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.
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).
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).
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).
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.
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.
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.
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.
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.
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.
PET-CT still shows NED, plus brain MRI is clear too. Switched to Ambien to help with sleep.
Had another brain MRI after 2 weeks of headaches. Fortunately, my brain is still unremarkable.
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.
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.
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.
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.
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).
Sometime last year, I became eligible to increase the time between my scans for the clinical trial, but I was too anxious about my cancer possibly coming back to do it. However, a long talk with fellow lung cancer activist (and 11 year survivor) Linnea Olson at the World Conference on Lung Cancer in September made me realize I was having a LOT of scans over the past years. I realized reducing my exposure to radiation was probably a good thing. So, as of November 2015–at three years of NED–I asked Dr. Camidge to schedule my scans for every sixteen weeks instead of every eight weeks (I wasn’t confident enough to go with every 24 weeks). I’ve also switched from eyes-to-thighs PET-CT scans to chest and abdomen CT scans, primarily because insurance was denying coverage of the PET-CT scans.
Still NED. Exploring ways to deal with fatigue. We”re checking my thyroid levels occasionally to see if perhaps it’s not functioning properly due to radiation back in 2012. So far, values are low normal. One possible cause of fatigue is low ferritin levels. I’m been prescribed iron supplements.
With all my travel, it’s hard to keep tabs on my warfarin dose (requires a blood test for INR every few weeks). I’m switching blood thinners to a pill called Xeralto, on the theory that my pulmonary embolism is more due to the prolonged presence of my power port than cancer.
We’ve decided to go to annual brain MRI scan. Camidge says for ROS1 patients with no history of brain metastases, an annual brain MRI is reasonable.
Cognitive issues are bugging me–I wake up fuzzy, I have more trouble focusing, and some days I just can’t get anything done (actually, it’s hard to tell how much of this is due to cancer, cancer treatment, menopause, age, or even just lack of sleep). Dr. Camidge says some cancer patients find Ritalin helps with such symptoms. I’m going to try it.
I fell again, this time a graceful trip and slide in the lobby of CU Cancer Center. The hospital did an xray to check me out –nothing broken but my pride.
I’ve been dealing with dry, itchy hands while on crizotinib, and it gets worse in winter. Moisturizer doesn’t help. On Camidge’s recommendation, I tried 1% hydrocortisone lotion and moisturizer, but it doesn’t help with the itching. My local oncologist has referred me to dermatology.
The FDA has approved crizotinib for ROS1+ NSCLC! Because it received accelerated approval based on a Phase II trial (instead of a Phase III trial), the clinical trial will continue. I could choose to quit the trial and get the drug at my home clinic, but I want to continue seeing one of the top docs in the world for my type of cancer. I’ll keep traveling to Denver for the trial as long as they’ll let me.
Swelling of feet and legs (edema) tends to get gradually get worse for some patients on crizotinib–like me. Some days it’s so bad I can’t bend my ankles. I finally decided to accept Dr. Camidge’s offer to reduce my crizotinib dose from 250 mg twice daily to 200 mg twice daily. Dr. Camidge says he wouldn’t lose a second of sleep over the lower dose–lots of patients do well on it.
Also, my power port has decided to stop working completely. Ever since it was installed Dec 2011, I’ve had to get periodic doses of CathFlow (breaks up fibrin sheaths that cover the tip) so we can draw blood from it. However, it now won’t let saline be flushed into it, either, so I had it removed. This means more needle sticks for labs and scans, but less risk for blood clots forming around the fibrin. So long, power port–4.5 years was a good ride.
My potassium level is low, probably from the crizotinib. My local onc says potassium supplements might help. I’ll give them a try.
Given that I’ve had no evidence of disease for years, I asked Dr. Camidge if I might be able to stop taking crizotinib. He said the only data we have is when some EGFR+ patients who’d been NED for a long time stopped taking erlotinib. All of them saw their cancer progress within one to two years. So, I’m staying on the crizotinib.
Power port was removed–woohoo!
I fell again (tripped on a carpet). Three falls in nine months is considered a trend. Could be the neuropathy, could be my balance is off. I’m scheduled for a few months of physical therapy to strengthen my leg and core muscles and reduce my risk of falling.
Now that my power port is out, it’s possible the source of the pulmonary embolism is gone. My pulmonologist and both oncologists might take me off the blood thinner Warfarin because I’m at higher risk of serious bleeding when I’m falling so much. We’ll see how the PE looks after my next scan before deciding.
I saw a neuro-oncologist for assessment of cognitive issues. Based on some testing, she says my memory issues are probably due to attention deficits (I failed 2 or 3 attention tests–when counting backwards, I skipped whole blocks of numbers and didn’t even realize it). However, the attention issues could be due to sleep, or mood. The Ritalin helps, but my focus and energy crashes after four hours or so. She suggested I try Concerta, an extended release form of Ritalin that lasts most of the day. She confirmed some neuropathy from toes to knees on both legs and from fingers to elbows in both arms; there are some drugs I could take to help with it, but the side effects (e.g., edema) could be problematic. She also identified some proprioception problems, which could be due to chemo effects or simply age; these could be why I’m falling so much–no good treatment for that other than working on my balance. I asked her about the pain in my left foot, and she said I should see a podiatrist for assessment of possible neuroma.
Podiatrist took an MRI of my foot, says I have left plantar plate tear (a torn tendon in the toe capsule of my 2nd left toe). Not clear how it happened–might have come from a fall, or just because my second toe is longer than my big toe. We’ll try a conservative approach first. He wanted me to take an anti-inflammatory, but I can’t take those while taking a blood thinner, so we tried a 10-day dose of steroid first. I’d forgotten how irritable and anxious those could me me feel. Unfortunately, it didn’t work.
Had an eye exam. Slight cataracts developing, but eye doc says my eyes look typical for my age. I’ll always wonder if the year on prednisone (steroids) accelerated the cataracts.
Had my first labs drawn without the port. I was afraid I’d still be a hard stick (I was before the port was installed), but everything went fine. Whew!
First scan without the port went fine, except that injecting the contrast blew out my vein. I have a nice bruise to remind me.
Scans are good, and the PE looks good on the scan too. We’ll try taking me off blood thinners.
The steroid didn’t fix my toe problem. Since I’m going to stop taking Xeralto, I can try taking the strong anti-inflammatory diclofenac to see it if reduces the inflammation and pain in my left foot.
Reflux is still a problem. I’m restarting omeprazole (Prilosec)–guess I’ll be on it for as long as I’m on diclofenac and Xalkori.
The persistent reflux caused me to have an upper GI scan and swallow test. It showed some scarring in the upper part of my esophagus (probably from the 2012 radiation), and a swallow reflex that didn’t always work right. Also, I occasional aspirate (pass fluids into my windpipe instead of my esophagus). Nothing to do about it, except take smaller bites, eat slower, and chew more thoroughly.
The diclofenac doesn’t seem to be working. My team agrees I should have surgery to repair the torn plantar plate, which will keep me off my foot for at least 6 weeks. I was somewhat anxious about how long I would be laid up, given that I don’t really know how long I have, but 6 weeks is doable. Amazing that any metastatic lung cancer patient can consider orthopedic surgery nowadays–targeted therapy is AWESOME.
As I continue to be NED on the lower dose of Xalkori, I will request to space Denver scans to every 6 months (instead of the current 24 weeks). Dr. Camidge is confident that tracking my blood biomarkers will give him an adequate heads up if my cancer begins to progress between scans (still waiting for the journal article on this research to get published).
Update Feb 2017:
CT scan of chest and abdomen show I’m still NED–woohoo!
Apparently my pulmonary embolism (PE) can cause heart issues. To monitor it, my pulmonologist ordered a transthorcic echocardiogram (an ultrasound of my heart). It showed early signs of pulmonary hypertension. The PE lies within the field radiated during my first line cancer treatment in 2012; it probably arose from radiation damage and scarring. There’s no treatment for it except to monitor it, continue blood thinners, and amp up the exercise frequently to keep blood flow going. Unfortunately, it will be difficult to exercise regularly while my foot isn’t fully functional.
My foot surgery was scheduled for 3/29. Pfizer told me to not take Xalkori for 48 hours prior to and at least 48 hours after the procedure. My pulmonologist said to stop the blood thinner two days before the procedure, and resume 24 hours after. I bought the knee roller, had the pre-op consult regarding anesthesia (a nerve block at the knee), and cleared my calendar for surgery 3/29. However, on 3/16 I became severely ill, probably a reaction to the Nystatin oral rinse I was using to clear an oral thrush infection (it felt more like the flu). I still felt weak and under the weather on 3/27, so we delayed the surgery until 4/12.
I was due to fly to Denver 4/16 for my clinic visit, but fortunately Pfizer allowed me to skip the visit and have my labs drawn at home. They’ll mail my Xalkori refill to me. That’s a big help.
Foot surgery went well–tendon repaired and secured in place, and 2nd toe was broken and shortened. Took oxycodone for 4 days, then quit. Fortunately I was able to put a walking boot on immediately, and walk on my heal after a couple of days. Being able to go to the bathroom by myself was a most welcome accomplishment! Now comes the long recovery …
Using the manual knee scooter is inconvenient, but far better than crutches.
My sleep doctor reduced the pressure on my CPAP and prescribed a new mask that fit in my nostrils instead of over my nose. The mask had been leaking, the air leaks were making my eyes extremely dry and itchy, and my dry mouth was causing oral thrush. Hope the reduced pressure will work at the higher elevation such as Denver.
Finally scheduled an appointment with dermatology–next appointment is in July.
Lots of travel this month. Good thing the knee scooter stands up to airline baggage handlers. Bit the bullet and rented an electric scooter at the big ASCO meeting (my out-of-shape bod isn’t up to 5 miles a day on a manual scooter). Hubby came along and played service dog for me.
Been having headaches, so had a brain MRI. Everything is fine. It’s always hard to know which headaches to be concerned about when you have metastatic cancer that likes to go to the brain.
Dermatologist checked my hands, found staph infection in my nose (found in 30% of population), prescribed oral antibiotic as well as ointment for nose and for hands. She also suggested I use coconut oil (like that used for cooking) and lots of hand lotion on my hands. I pointed out a small spot on the bottom of my left little toe (only noticed it because I’d been looking at my left foot so much after surgery); she wants it removed and analyzed since I don’t have many moles, and it’s in an unusual place. She says it’s unlikely to be skin cancer. If I’d heard this BC (Before Cancer), I might have been concerned. Now it’s just another biopsy.
I get to walk without the knee roller!
For one week, Seattle and the Puget Sound area had unhealthy air due to forest fires north of us in British Columbia. Our air quality was worse than Beijing! I stayed inside with the air conditioning and a HEPA filter running nearby. My throat burned when I went outside even briefly.
The first morning home after a week-long road trip that included 10,000-step days in national parks, I woke up to find my left foot was blue, puffy, and warm. The podiatrist had warned me that surgery had disrupted the circulation patterns in my foot. However, cancer patients are always at risk for blood clots. The podiatrist’s office told me to go the the ER to be checked for a clot (I didn’t have one), then go to the podiatrist’s office for a quick exam. An x-ray showed stress fractures in my foot. ( evidently didn’t do too well with the “resume walking gradually” post-surgery instructions–in my own defense, the they weren’t very specific. Back into the surgery shoe and onto the knee roller for another six weeks. Damn.
On the up side, my PET scan says I still have no evidence of disease.
My oncs agreed I should have a bone mineral density (BMD) test and endocrinologist consult. I had several concerning risk factors: I developed stress fractures in my foot, I’m in menopause, I’m over 50, some of my cancer CT scans detected mild osteopenia, a test in Costco said I had moderate osteopenia, I’d had a year of steroids awhile back, and my calcium levels run low while on crizotinib. Fortunately, I had normal bone density. However, my vitamin D level was at the bottom of the normal range (which isn’t unusual for people living at higher latitudes), so I’ve added vitamin D supplements to my pill regimen. Hope it helps my foot heal faster.
Clean scans again–woohoo! This time the CT scans included a scan of my neck, which hadn’t been scanned since 2012 (after my second line treatment irradiated the area). It showed my right jugular vein has been completely closed off by scarring from radiation! It’s not an issue since other blood vessels have taken over draining the area. I’m just living long enough to have long-term effects of radiation–which is a good thing in the big picture. I’m also living long enough to get check for old-age issues like osteoporosis. Well, Dr. Camidge did say he was aiming to keep me alive long enough to die from something other than lung cancer…
The foot is healing well, too. When hubby and I went on a cruise, I took trekking poles with me to use on shore excursions to help with balance and lessen the shock on my foot. I also used the knee roller while on board to avoid overstressing the foot again. Fortunately, I also took my antibiotic ointment with me, which came in handy when I got some kind of bite over my eyebrow that became badly infected.
As of November 6, 2017, I’m five years on my crizotinib clinical trial, and still no evidence of disease! Yay for targeted therapy! Labs are good. Next scan in is January.