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 the first couple of years of 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.
Update 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 Nov 2015:
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.
Update Dec 2, 2015:
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.
Update January 2016:
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.
Update Feb 2016:
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.
Update March 2016:
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.
Update July 2016:
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.
Update August 2016:
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.
Update Sep 2016:
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!
Update Oct 2016:
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.
Update Nov 2016:
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.
Update Jan 2017:
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!
Update March 2017:
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.
Update Apr 2017:
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 …
Update May 2017:
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.
Update Jun 2017:
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.
Update Jul 2017:
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.
Update Aug 2017:
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.
Update Sep 2017:
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.
Update Oct 2017:
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.
Update Nov 2017:
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.
Janet – I am so happy to read you are doing well! God bless you and family. Thanks for sharing your journey thru your writings and keep up the great work!
Thank you, Jackie! Hope you’re doing well also.
Give us an update :))) Hope all is well with you.
I just checked notify me of new comments via email… sorry for the 2nd email.
I just came across your blog – so wonderful that you are receiving positive results!
I was diagnosed in April 2013 with nsclc also, however I tested egfr positive. I had chemo for 3 months and then required a pneumectomy on my right lung due to location of tumor. I am now on day 2 of radiation (planning to have 25 in total). I am a 37 year old female and live in Queensland,
I look forward to following your blog and reading of your continued good news 🙂
Just ran across this. Thanks for posting. Are you still in the Seattle area? I live across the water in Poulsbo. Xalkori didn’t work for me 😦 but a chemo cocktail did. I am waiting to get on a second generation Xalkori drug trial.
Yes, Gwynne, I’m still in the Seattle area. Sorry Xalkori didn’t work for you, Hope one of the second generation drugs does the trick! Which one(s) are you considering? Have you obtained a second opinion from ALK+ lung cancer expert Dr. Camidge at University of Colorado?
Turns out I do not qualify for a second gen. Xalkori trial at this point. My last month on “X” was too long ago. The devil sure is in the details with drug trials. The good news is that no cancer cells were present in the fluid drained from my lung last Thursday. I will start a maintenance chemo later next week, say every three weeks and see how things go. Not consulted yet with Dr. Camidge, though am aware of him. My onc is going to chat with Dr. West ( my original 2nd opinion doc ) to see what other local options may exist. Nothing is too critical now. I had lots of issues early and late summer. Then brain surgery at Swedish mid-September. I have an acquaintance who is a patient of Dr. Camidge and I have family outside Denver so if that becomes an option it is easily doable.
What is your opinion of the American Lung Association? The Bonnie J Addario Lung Cancer Foundation? Thanks, Gwynne
Reading your blog makes us hopeful..Thank you! My sister was diagnosed in October of this year with non small cell lung cancer stage 4 its all localized in her chest area, has not spread anywhere else outside the chest but doesn’t feel like they’re doing much for her. She is currently doing her fifth round of chemo and then they will give her a break however I was wondering how to get ahold of the doctor you are speaking of in Colorado could you provide me with a number or email something maybe I can get help from them. Thank you very much and pray that you continue to do great! Tammy Reyes
You can learn more about the University of Colorado thoracic oncology remote second opinion program here. It was started by Dr Ross Camidge.
Beautiful blog! Are you still followed by SCCA? Did you find Dr. Camige and the trial yourself? I have EGFR EXON 21 I have done well on Tarceva but I am beginning to show resistance-slow so far. I have an appointment to see Dr. Gandara at UC Davis , but I am also thinking about Dr. Camige. I hope you continue to well and enjoy a wonderful holiday.
Thank you, Katie! I haven’t had any treatment or consultation at SCCA yet. I found Dr. Camidge and the ROS1 trial on my own, after another ROS1er in the Inspire.com Lung Cancer Support Community told me about the ROS1 mutation. The remote second opinion offered by University of Colorado Hospital is a great option. SInce you have EGFR, you might also consider contacting Dr. Lecia Sequist at Massachusetts General Hospital–she’s one of the top EGFR researchers in the world.
Thank you for the information on Dr. Leica Sequist. I am going to check out the Inspire community too. Katie
QUITE the journey! Love the update series, it’s like a how-to list for any patient confronted with a challenging cancer dx/tx. Best of wishes for staying “Friend of NED”
My Mom is stage 4 with NSCLC and she too is ROS1 positive. Unfortunatey, crizotinib did not work (or, at least yielded only a minor short term benefit). I was looking for trials with AP26113 on clinicaltrials.gov and noticed that there appears to be one actively recruiting: NCT01449461
In the description, it is stated that expansion cohort 4 includes those with ROS1 mutations. You mentioned above that trials for this drug for people with ROS1 mutations had been closed, and so I’m wondering if you had seen this one. Perhaps the information on the site is stale and it has indeed been closed?
I’m sorry that crizotinib did not work long for your mom.
I have not heard that the AP26113 trial’s ROS1 arm reopened. I will be seeing Dr. Camidge on 28 January and will ask him about this. I’ll post what I learn here.
Good luck to your mother and you.
The ROS1 arm of the AP26133 trial has NOT reopened. The clinicaltrials.gov site shows July 2013 as the last date they verified information about this trial, so it’s showing old info. Sorry I couldn’t give you better news.
Dear Squanch, I have seen you in inspire. Thank you again for spreading knowledge about this disease. You inspire me! I have had progression of my disease on Tarceva and will need a new treatment. I may ask to have the tumor rebiopsied. You had electromagnetic bronchoscopy, may I ask where you had that done? I don’t know what new tech is available for bronchs but I understand that it’s safer if guided well. Thank you, I hope you are continuing to do well. Katie
I had my EMN bronchoscopy at Virginia Mason Medical Center in Seattle, WA. This procedure is especially useful for sampling nodules that are on the periphery of the lung and not accessible by needle biopsy or EBUS. Many hospitals and clinics now offer it. Be sure to ask how many times the doctor has performed this procedure — research shows the yield improves with experience. Also ask your doctor whether your insurance will cover the procedure. Some insurance (including most Blue Cross Blue Shield plans) still will not cover it because it hasn’t been “proven” in a Phase III clinical trial.
Thank you so much for your helpful hints and quick reply. Katie
So happy for you!
As a smoking cessation instructor for the past 32 years, I believe the stats about 2/3’s of the people with lung cancer never smoked, not to be true. The CDC states that 85 percent of lung cancer patients have, at some time in their lives, did in fact smoke or lived with smokers.
Your attitude is wonderful…..keep the good work up by spreading your message!
Thanks for the encouragement!
As for the stats, I didn’t say 2/3 of people who have lung cancer never smoked. Among people newly diagnosed with lung cancer, more than 2/3 did not smoke at time of diagnosis. This includes people who either never smoked or are former smokers (many of whom quit decades ago). The CDC says the prevlance of nonsmokers with lung cancer is approximately 80% (17.9% never smokers, 61.2% former smokers) per Table 2 in this CDC document:
Centers for Disease Control and Prevention. MMWR Weekly 56(44);1157-1161. (9-Nov-2007). Retrieved Oct 30, 2013, from http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5644a2.htm.
We actually cannot determine for certain what caused any one individual’s lung cancer. While tobacco smoking and secondhand smoke are risk factors for lung cancer, there are other risk factors, too: radon gas, air pollution, exposure to toxic materials, genetic predisposition, and previous cancer treatments. Even arsenic in drinking water and viruses are being investigated as lung cancer risks. You can find more statistics and supporting documentation here:
Very happy you are doing so well with such an aggressive cancer. I wish you all the best! Keep informing people,with your knowledge.
I have lung fibrosis,asthma,severe coughing.I have immunine deficency and get immunine therapy.
I have wondered if that might be helping my lungs! Hopefully it is!
Best hopes for success with your immune system therapy.
Congratulations on your recent NED! I am sure someone has asked you this before but I was wondering if you have tested your home for radon? The number one cause of lung cancer among non-smokers is exposure to elevated levels of radon (according to the US EPA and the World Health Organization).
Yes, radon gas in homes is a risk factor for lung cancer. However, we live in an area of the country with typically little radon, and our home tested very low.
Although radon is not as much of an issue in Seattle, there are home in Southwest Washinton and Eastern Washington that test high for radon levels. In Spokane county, where I grew up, radon abatement is now required in new homes. Had I realized the risk I had I may have pursued earlier screening. The house I grew up In had a high level of radon and my mother died from NSCLC and now I have NSCLC. Maybe knowledge about radon levels will help someone be diagnosed at an earlier stage. I read your cancer journey again. You are such an inspiration. I wish you continued NED. Katie
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Much strength to all of you! I ended up here because I am trying to read up on NSCLC for my friend / coworker who was just diagnosed. I am trying to find some encouraging news / info to help her. I wish you all the very best!! Bridget
Janet, congratulations with NED….That is fabulous! I was originally diagnosed back on January 10th, 2014 as stage 3b and just upped to stage 4. I have a a 6 cm tumor in the upper lobe of my right lung…it is also in some of the nodes in my chest and the lymph node near my collar bone. I was supposed to start chemo and radiation together but a scan showed a hot spot on the T5 bone in my upper back so for now it is just chemo. I had my first chemo treatment of Carboplatin and Permetrexed (Aliminti) last Friday Feb. 28, 2014. So Far so good…I did not get sick at all but did feel increased fatigue. I will be having the chemo every 3 weeks. My next appointment is March 20th. On Monday night I did experience an awful pain that went across my collar bone and wrapped around both shoulders to my back and another pain that started in the center of my chest and wrapped around to my back. I took Advill and was able to sleep and woke on Tuesday feeling great. I have noticed the lymph node near my collar bone has shrunk. I find your story encouraging and inspirational. By staying positive, praying and fighting I plan to one day be NED also. Wishing you the very best and continued NED.
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Thank you to each person who contributes to this blog. I just discovered it tonight and will maintain contact. I have spent the last 3 years helping with ALA “Better Breather” programs and realize how many variations of lung disease exist. Family history of throat/lung cancers and smokers, so interest in all this information. Helping 85 y.o.friend with driving to her daily radiation tx for breast cancer/mastectomy. with at least 2 lymph nodes diagnosed. Will be interested to see how she recovers with the various treatments. This blog is immensely helpful! mg in San Diego area.
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Just arrived home from hospital
Lung surgery cancer 7 hour. Will find out what is next the 18th. This was a surprise
Went to play golf slipped on wet cement broke my nose surgeon would not operate with spot on lung X-ray. My primary dr. Said it is ok nose dr said no
2 X-rays 1 ct 1 pet said mass in lung. GOD is great he tripped me so I would find it. It happened so fast feeling good golfing going doing and in one month more tests and dr then I have had in 50 years. I am now looking for help to know what is next. Thank you for sharing your journey. I guess this is not “here is a pill see you. In three months” hugs Arlene
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Sorry to hear you’ve had to have lung surgery. You never know for sure what a mass might be until you get the biopsy results.
If it is cancer, there are many trusted websites where you can learn more about lung cancer and connect with lung cancer patients. Two of the most informative sites are cancer.gov (created by the National Cancer Institute) and the guidelines of the National Comprehensive Cancer Network at http://www.nccn.org/patients/guidelines/cancers.aspx. Several lung cancer organizations also have good information available.
Don’t get wrapped up in statistics–those are based on data collected before newer targeted therapies became available, and apply to groups, not individuals.
Best hopes for good biopsy results and successful treatment, whatever the mass proves to be.
Janet. I appreciate you so much for all your helpful info on inspire. After reading this blog, I can see what you have been through. Oh my goodness , what a challenge. I am so very thankful that you have the knowledge to be able to share your research and personal journey with others. I hope that things keep going well for you.
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Thanks for your comments and good wishes, Jan.
Thank you for sharing. I only wish I was familiar with your experiences a year ago, it may have helped us make different choice of treatment. Stay strong.
Thanks, Tom. Best hopes for a good outcome for you.
Do you think that your two lymph node resections were helpful? Even though something different grew back in the same area. I ask as I am stage 4 adenocarcinoma, who was able to get chemo and radiation chemo treatments. Was NED for 7 months, then started on Tarceva, and 6 mo. in the two small paratracheal lymph nodes have shrunk. My Onc, the famous Dr. David Ettinger, 72, at Johns Hopkins says I now have limited disease. Would you think that it may be worth considering surgery, or atleast a consult. My doc did say the Tarceva is working even though you tested negative for the mutation at the start, why would you want surgery?
I just want the nodes gone. I figure the less lymph fluid will circulate fewer cancer cells.
What do you think could be my next steps. Am 51 exposed to 20 times what is considered save levels of radon, for 11 years from age 4 to 15.
I did not have lymph node resection. I had an open biopsy to obtain lymph node tissue to see if my cancer really had moved outside the chest area (which would make me stage 4). We knew that if the removed node was cancerous, the biopsy was unlikely to remove all the cancer because it was now spreading via lymph. In fact, a new tumor grew extremely fast in the area where those lymph nodes had been removed.
Where did you grow up? I, too, grew up in an area with high radon.
Thankyou so much for sharing this very private journey,you are an inspiration,may gods love surround you always on your journey,felt so honoured reading your amazing experience,scarey I,m sure but you really put your story across honestly and in a way we could all understand. God bless you.xx
Thank you for your kind words! It’s nice to know this blog is helpful to you.
I have multiple lung nodules the largest is 3 1/2 centimeters in the left lung. I have had them for a couple of years. In the right lower lobe of the lung four new 1 cm nodules just popped up! I have not had a biopsy as of yet, for I have MDS and on Chemo, a Blood Cancer, and multi focal or metatastic lung cancer is suspected. The onc suspects an infection in the lower right lung nodules? I am not a surgical candidate I am neutropenic, and Cyberknife is being considered. Maybe! If the the lower lobe new right nodules disappear. If not I was told I have a year to live. A biopsy is also being considered? I am 72 years of age?
I hope by now you’ve had a biopsy, and you have a better grasp on what’s happening with your lung. I pray it’s something easily fixed. If the biopsy shows lung cancer, be sure to ask your oncologist about testing your tumor tissue for mutations such as EGFR, ALK, and ROS1. The targeted therapies available for those mutations are usually much easier to tolerate than chemo, and in some cases are available as first line treatment. Best hopes for your health.
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I feel very blessed that my journey with Lung cancer was such that it would prompt me to continue my fight if it comes back. I have heard some horror stories from friends and other blogs and I feel almost guilty that mine was such a breeze in comparison. I had stage 3A, with a treatment of chemo, radiation and surgery, My first CT scan is June 16th .and after reading your blog I am concerned, but hopeful and feel embarrassed to ask my question. I have always lead an active and healthy lifestyle and 6 weeks after surgery and the nerve regeneration I was back in the saddle. I also have to mention that I broke my ankle 2 weeks before chemo, needless to say I was inactive for 2-1/2 months. I gained weight and now no matter what I do I cannot lose it. The winter in Illinois was brutal and my yard took a beating, so I am out there 4-5 hours a day lifting mulch, top soil, planting, taking care of a pool, walking my dogs a mile a day. Eating healthy, in the summer I eat salads galore along with fruits and plenty of water. my question is not vanity based cause for the first time my knees and feet are painful and I am living on Advil. My oncologist says it is not based on any treatment I had but I find that difficult to believe. Never had a problem losing weight with my diet and lifestyle. Is there damage done to my hormone levels from chemo? Thyroid test normal but something is very wrong. Thank you for any help.
No question about effects of cancer treatment is unreasonable. I am not a doctor, but I can share what I know from my own experience.
I’m glad to hear you did you well with your lung cancer treatment! I hope your scan shows you have No Evidence of Disease, and you stay that way! Staying as active as you do will help improve your lung function after lung cancer treatment, and make you better able to tolerate further treatment should you ever need it (heaven forbid).
I assume if your first scan is next week, you finished treatment about 8 weeks ago? Radiation keeps working in your body for six months or even longer, and can cause muscle weakness in areas that weren’t irradiated. You might be experiencing muscle weakness that presents as pain when you move a certain way. Certain chemos (especially taxol) can cause neuropathy that might feel like pain in your feet and lower legs. I’ve also read chemo can cause some metabolic changes for a while, and takes a few months to leave your system completely (however, I’m not sure I can find the citations to back that up). All of these can be temporary, although some people (like me) continue to experience neuropathy long after treatment ends.
You didn’t mention how old you are, but I’ll offer this as a possible reason you find it so hard to lose weight. I was 55 when I started my lung cancer journey, staged 3A as you were. I had been in peri-menopause for a while, but the combination of carbo-taxol chemo kicked me into an abrupt menopause. Other female lung cancer patients I know experienced the same effect from aggressive chemo. As you know, hormone levels change significantly in menopause, and many women find it much harder to lose weight after the change. Steroids, inactivity and my current targeted therapy have gifted me with 60 extra pounds, and I can’t lose an ounce unless I exercise at least 30 minutes every day and limit my food intake to 1200 calories per day.
Be sure to drink plenty of water to help your body stay well hydrated. I dehydrate more easily now than before treatment, and when I’m dehydrated, I definitely have more aches and pains.
Best hopes for a clean scan on June 16th!
I grew up near the smelter also….hmmmmm
VM was my biggest mistake! Warning!
Hello Janet, I am truly glad that you have and continue to win your battle against lung cancer. Just wanted to share. My wife Vickie passed away on Jan. 2nd this year. She was diagnosed with lung cancer stage IV. It had spread to her brain, spine, lymph nodes, and pelvis. She had no cough or other symptoms but went to the doctor for pain in her back. They told her she had arthritis. X-Ray s showed nothing. Did an MRI and voila! She did not smoke. 4 months from xxx to her passing. I am now an active advocate for lung cancer awareness and destigmatization. Thank you for your current efforts in the same area. Prayers continue for you and others.
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Jim, I’m so sorry you lost your wife. Lung cancer can move so terribly fast after diagnosis. Glad to hear you’ve become an active advocate. Hope our advocacy can help reduce lung cancer deaths and recurrences, and enable many metastatic patients to live with lung cancer as a chronic disease.
Thank you for sharing your story and for spreading awareness of lung cancer. I lost my husband to the disease in December 2012 after two years. I would like to see more efforts in research and new treatments for lung cancer. The 16% five year survival rate is atrocious. No one deserves to die of this terrible disease, no matter their risk factors. (smoking, environment, genetic) I miss my husband every day.
What’s up, everything is going sound here and
ofcourse every one is sharing facts, that’s truly good, keep up writing.
so glad your doing so well. how do you deal with the uncertainty? I had a 11 mm. cancer removed 17 mos. ago. so far so good. But i worry all the time. Why did you stop taking gabapentin? Look forward to hearing from you
The uncertainty can be tough. The existential angst gets me down sometimes. It flares whenever another member of my lung cancer community dies. When it’s at its worst, I try to distract myself by finding some way to enjoy life a little each day: spending time with family, petting my cats, viewing nature’s splendor, or just watching a TV show that made me laugh.
The uncertainty lessens the longer I remain NED on Xalkori. I’m sure it will come crashing down again if/when I have another recurrence, but for now, I can pretend I’m almost normal. Most of the time.
I stopped taking gabapentin because it made me mentally foggy in the mornings. I then discovered it was also contributing to my edema (a known side effect of Xalkori). I talked a bit about deciding to stop gabapentin in my post “The Side Effects Samba” here: https://grayconnections.wordpress.com/2014/01/26/the-side-effects-samba/.
Best hopes that you’ll continue to do well–may lung cancer never darken you door again!
I just ran across your blog and I am so happy to read you are doing well! Thanks for sharing your journey thru your writings. I diagnosed with adenocarcinoma stage IV lung cancer(nsclc) metastasized to liver and bone and I have to start my chemo in 3 weeks. I did mutation test and EGFR and ALK are -ve and waiting for ROS1 result. I have 2 most beautiful sons 14 and 15 years old and I am so scared of dying and leaving leaving my kids alone. I had so much dream for them and unfortunately I can’t plan anything and I hate cancer. I need a peace of mind and I’m still in shock 😦
It’s interesting enough that I just got a phone call from my doctor that my mutation is not ROS1 either!
I’m sorry you’re dealing with lung cancer and have not yet found a targetable mutation in your tumor tissue. I hope you will consider getting a second opinion at a National Comprehensive Cancer Network facility (http://www.nccn.org/members/network.asp). If you can’t travel to any of them, University of Colorado Hospital can provide a remote second opinion (unfortunately not covered by insurance): https://www.uchealth.org/Pages/Services/Cancer-Care/Remote-Second-Opinions/Remote-Second-Opinions-for-Thoracic-Oncology.aspx
Best hopes for successful treatment!
Thank you for sharing your journey of fighting lung cancer! God bless you!
My dad (70yrs) was diagnosed with stage 4 non-small-cell lung cancer. He had a surgery to remove two tumors on the right lobe, still has one on the left.
He is tested ROS1 positive. However he lives in China, the Xalkori is not covered by insurance. He will need to pay by himself the first four months during first year, and the first two months during second year, that’s about $50000 US dollars total. The rest is free from the pharmacy company. Is there any program in U.S. he can join to offset some of the expenses? I live in California, I can bring him to California. Thank you very much if you have more information.
Sorry your dad is dealing with lung cancer. Yes, there are programs available from some charities as well as the drug manufacturer Pfizer that may help with the cost of Xalkori for your dad. I’ll go find them and post as a reply again in the next few days.
I was so happy to find your blog my son who is 39 years old was diagnosed with NSCl adenocarcinoma in early January. He had never smoked and was very health conscious. I’m now living with fear on a daily basis. Clint has tumors on left lung, rib cage, sternum, liver, pelvis, spine and brain. In may 4014 he went to doctor because of chest pain and allergy symptoms chest x-ray was clear he was told he had asthma. Clint started having problems with loosing his voice in around October 2014 and continued to struggle with asthma like symptoms. You know how mama’s can be so I went back to the Doctor with him shortly after Christmas and from there they did ct/pet scan/MRI. Clint did test positive for the ALK+pos gene and has now been on Xalkori for 4 weeks. He also started WBR last week for 14 sessions. He has had very little side effects with Xalkori and until a few day’s ago his voice even was sounding better but the last few day’s have proven to be hard on him concerning his voice problems. I’m afraid Janet if this might mean the Xalkori is not working. I’m now a member of inspire and there is so much support available from this site but when I read your journey I had to reach out to you and say thank you for all you are doing. I forgot to say that clint is the most positive person I know and has always been that way he is also very spiritual and we both gather are strength from the Lord. I just yearn to hear from people surviving lung cancer and fighting the fight it helps me to see that there is people living and not always dying from this awful disease. God Bless You and keep you well to continue your amazing work and journey with cancer.
I saw your comment and it resonated with me as I was just at the Pierce County Survivorship Conference and heard similar yearnings from lung cancer survivors to meet other survivors. I work for Free to Breathe – a nonprofit organization whose vision is to double the lung cancer survival rate by 2022. I’d like to invite you to the Tacoma Free to Breathe 5k Run/Walk on September 19th. It will give you an opportunity to meet lung cancer survivors and be a part of a community who understand what you and your son have gone through. If you are interested, you can learn more at http://www.freetobreathe.org/tacoma. I hope you continue to find others who inspire you.
Thanks for the invite! I actually attended the Tacoma Free to Breathe walk last year. Unfortunately, I’m unable to attend this year due to a previous commitment.
Hi Janet, Just checking to see how everything is going with you. How are you feeling?
Praise the Lord. Thank you for sharing your story.
Hello, I really would love it if someone could help me! I have had chronic lung inflammation for a long time, and I’m worried I have cancer as well . I currently buy generic advair online to treat my symptoms because I don’t have healthcare and I get half off with a code (50%off). Doctors often dismiss me like you said early on in your article, with antibiotics that don’t do anything. They don’t want to order extra tests because I don’t have insurance. My medication isn’t working that well anymore and I’m worried. Should I try a different medication, or try a different doctor?? I don’t have much money. Here’s what I take, I’m not sure if it’s what you normally get from a doctor as it’s generic http://canadapharmacyrx.com/generic-advair-diskus.html
Sorry you’re feeling anxious about the possibility of lung cancer. Some facilities offer lung cancer screening at low cost (around $100) for people who do not meet the Medicare criteria for covered screening. You can learn whether you might be a candidate for lung cancer screening here: http://www.lung.org/lung-disease/lung-cancer/lung-cancer-screening-guidelines/lung-cancer-screening-for-patients.pdf
You’re such a braveheart! Thanks a lot for documenting your journey and sharing it with the rest of the world as it gives immense insights to others in similar situations. I’m from India and I lost my father to lung cancer earlier this year. I have been there with my father and I know what it is like. It takes lot of courage to fight the battle within.
So sorry you lost your father to lung cancer. My sympathies to you and your family.
Thanks for your comforting words! Appreciate it and wish you all the best!
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Thank you for sharing your courageous fight with the beast.Your story is absolutely remarkable!!
My best friend just got his lung biopsy results and the dreaded word adenocarcinoma is up.He was trying to get a diagnose for the last 5 months.In August 2015 an X-ray showed 11 sm mass in his left lung.After numerous CAT/PET scans and the biopsy in October 2015 the doctors came to the conclusion it is an adenocarcinoma.We are still in shock and there are thousands of questions unanswered.He was hoping that after the biopsy his cancer will be staged,but we still don’t have this information.Do you know from your experience when and how the doctors can definately know what stage of non-small cell lung cancer he has?
I’m so sorry your friend had to join the lung cancer club. If he must have lung cancer, adenocarcinoma has the most treatment options. Staging can sometimes take weeks, depending on a variety of factors. I had an x-ray, followed by a CT, bronchoscopy, PET scan, surgery consult, and finally a mediastinoscopy before my staging was completed. The whole process took about three weeks. LUNGevity.org has a great list of questions to ask the doctor. Hope your friends tumor tissue undergoes molecular testing so he is made aware of all his treatment options, including clinical trials. More info on the diagnostic and staging process is available in the NCCN patient guidelines. http://www.nccn.org/patients/guidelines/nscl/index.html
Wow! Thank you for sharing your very personal and brave journey. I am a 38 year old mom of 3 (under 5 yo) who was diagnosed December 2015 with ALK + adenocarcinoma of the lung, stage 4. Started xalkori less than two weeks ago. Cough is better already so I’m feeling hopeful about this treatment. Just wanted you to know (again) how meaningful to me it is to hear your story and be able to feel close to and hopeful from a person I’ve never even met. Many many thanks…
Thank you for your kinds words! Glad you found this blog helpful. Best hopes for a great outcome on Xalkori for you! (You have other options for ALK, too)
My mom completed treatment for a 7cm NSCLC in her right upper lobe, and she had clear PET and brain scans in December. She was stage IIB I believe. She had a wonderful Christmas and New Years, but got sick this past week and is in the hospital now, with nausea vomiting weight loss dehydration, and they saw something on her liver so now it seems we are heading back down this road again…..so disheartening after thinking she was cured, and she even had the prophylactic brain radiation because they said that’s where it usually comes back. She is in Arizona and im in Ohio, so not making it easier to be so far away. I’m so happy to read your journey is going so well im glad I found your blog.
I hope your mom finds a more effective treatment. She might want to get a second opinion at the University of Colorado with Dr Ross Camidge.
I wrote you in June of 2014 and so sorry I wasn’t aware there was a response. I was recovering from lung surgery and asked a question concerning weight loss.
Lost 10 pounds by October , slow progress, hard work and was then diagnosed with metastatic brain cancer. I thought I had a stroke, slurring my words, confused, strange behavior. Dr. found 5 lesions ranging from 2.5 to1.5cm
and unable to speak. Went into the hospital the next day and put on dexamethasone. Had full brain radiation and cyberknife. I am 64. My lesions have all been eradicated except the largest one which is .6 Clear CT scan for 2 years. My oncologist hugged and kissed me and believes I am the 1% to survive this cancer. I hope he is right and he contributes it to my attitude. I also contribute it to my positive attitude and the Lord having my back. God is awesome! I think on our humanly part we must maintain a positive attitude and a warrior mentality and God will get us through. Bless you Janet and continue your fight. It looks like you are also doing well.
Found this by accident–don’t even remember what I was looking for! I’m in my 65 year and was diagnosed with NSCLC 3B in 2009. I went through Chemo & Radiation concurrently for 3 months and then started on 150 mg of Tarceva (EGFR mutation). I had to reduce dosage to 100 mg. about a year and a half ago because of skin erosion in my nose. I also have issues with my eyes, but feel extremely fortunate esp. after reading this blog. I am very active and feel like exercise is the prescription to my good health. Blessings to everyone who has joined the Cancer Club!
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Thank you so much for sharing a detailed account of what you’ve been through. Just this week we received an NED notice of my mom’s non-small cell lung cancer stage IIIB after nine months of fighting. She is not choosing to be on any maintenance drugs nor was advised to. After her next scheduled pet scan in two months she doesn’t want to be rescanned. I’m uncomfortable with that decision and hope she changes her mind because of how quickly things can metastasize. She was tested for the common genetic mutations but was not tested for the Aro last one that you mentioned. If anything should happen or recur I will definitely send that information to her.
Thank you again and I’m so glad you are living proof that someone can survive from lung cancer !
How wonderful that your mother has achieved No Evidence of Disease! I hope she never has to deal with a cancer diagnosis again.
If she does, she will likely have new treatment options. There are many new targeted therapies as well as immunotherapies being developed and approved.
Dear God you have gone 2 hell and back you sure fought but then your still here what a wonderful story and may you continue to have all the luck your one feisty man all what you went through and if that didn’t kill you ether will cancer. good luck and thank God your still here to fight. God Bless you and many years to come … Vickie B.C Canada
Thank you for your blog and for everyone’s comments. I came across this blog, searching for information for my mother. She was administered into the hospital in August 2016 after having pain in her shoulder blade for just under a year. Doctor had diagnosed her in January 2016 as having shingles. The past couple months have been a roller coaster as we awaited diagnosis and prognosis. We know she has adenocarcinoma on her left ribcage, but we are told that when the results were sent in the lab said it isn’t lung cancer. The ongologist will be treating it as lung cancer. Cancer cells were found in the pleural effusion, so unfortunately surgery is no longer an option. Without chemo we were told she would have a couple of months, with chemo – hopefully longer. My mother is 58 years old. I am praying that she can have more time, and a good quality of life at that. This news has been devastating.
Anne, I’m so sorry to hear of your mother’s lung cancer. I know such news is terribly hard for family members as well as the patient. Has she had her tumor tissue tested for EGFR, ALK, and ROS1 genomic alterations? Best hopes for effective treatment for her!
Thank you for your work which inspires and helps so many.
I stumbled into your blog today. Both my parents had cancer, which triggered awareness.
I noticed you are aware of targeted therapy as a cancer treatment, which is great.
I wanted to make sure you are aware of a target therapy, which Moffitt Cancer Center now discovers to be a, small molecule “ablative immunotherapy” (can have a bystander effect to find other tumors).
Bottom line is, patients which had no other treatment option, are alive today, NED 5 years, after PV-10 treatment. No adverse effects or known resistance. Rare.
Please know you can pass along this rarely known trial, and one-of-a-kind treatment.
Best courage to all for helping others.
And, I am happy to share and tell what I know on PV-10, if you write:
FEW LINKS ON PV-10 (fyi: Rose Bengal is made of coal tar)
Thank you so much for sharing information…………..
HI, so happy about your NED status. My sister was DX with lung cancer in August 2016, I decided to have a 99.00 self pay CT scan and with no symtoms whatsoever I was DX with a 19mm tumor which was adenocarcinoma with lymph nodes involved. PET scan and MRI to the brain were clear. I received 35 radiation treatments and 5 rounds of chemo from DEC 2 to Jan 20th. I am on a 8 week break and will have further scans and three more chemo treatments 3 weeks apart. I am sorry to say I have not asked further questions regarding targeted therapy. I had very few side effects and right now I am feeling great and have lots of energy. Can you help me with questions to ask?
I am so happy that you had lung cancer screening and caught your lung cancer early! Hopefully your current treatment will cure your lung cancer, and you will not need to any further treatment like targeted therapy (which currently is only prescribed for patients with certain types of lung cancer that has progressed to stage IV). If you want to learn more about targeted therapies in the future, here is one place to start:
Best hopes for successful treatment for both you and your sister!
I have a PET scan scheduled for March 27th. On April 5th, I start three rounds of six hour chemo treatments. I am feeling so good healthwise, I have a lot of depression and anxiety though. I just cant get past the prognosis for lung cancer. Seems very poor statistics for a 5 year survival. Even tough mine was caught in a screening, it is still stage III.
If you have stage III lung cancer, it is probably non-small cell lung cancer. Stage III is considered curable, and it sounds like your doctor is going for a cure. Best hopes for great results!
If (heaven forbid) your cancer does progress after treatment, PLEASE ask your doctor about molecular tumor testing. It could make a HUGE difference in your outcome. You can learn more here:
Click to access patient%20resource%20guide.pdf
Thank you, yes they are going for a cure. Stage III adenocarcinoma. I have had 35 radiation and 5 chemo. First PET scan after treatment on March 27 th. I will let you know. I’m pretty isolated due to bouts of depression.
My mom (68yrs) was just told there was a mass found in her lungs. We are going this Friday to talk about next steps. She was a heavy smoker for many years. I have been reading everything I can to get informed for the many appt’s and tests to come. I wanted to say thank you for writing your blog and going into so much detail about your treatments. It has been so helpful. Also I wanted to tell you how optimistic and brave I have found you to be through your words. Are you still NED? Have you had to have any more treatments, since December 2015? I’d love to know.
If you have Any words of advice or any specific questions to ask our team, I’d love to know. Thank so much
Angelle (from Ontario, canada)
Thank you, Anna.
It’s good to hear hopeful stories. I had stage one nsc lung cancer on my left lower lobe which they removed last year. A year later I had same thing on right lobe and had a wedge removal. Haven’t found out yet if it was spread or they it’s possibly another prime cancer.
Janet, sorry to hear you’re dealing with a second bout of lung cancer. Best hopes for a complete cure!
My 34 year old brother was diagnosed with stage IV NCSLC adenocarcinoma in January of this year. He had been being treated for pneumonia for about 3 months when the fluid drained around his lungs tested positive for cancer. He was an otherwise healthy nonsmoker so this has been a devastating shock for our family. His tumor tested ALK + and crizotinib was his first line of treatment. After discovering a large brain tumor his treatment was switched to Alectinib because of its effectiveness with brain mets. He had a pleurx catheter inserted about 2 months ago and we drain at least 850 ccs every three days. We just discovered last night that his Alectinib dosage is supposed to be 8 pills a day (1200 mg) and we have only been giving him 4 pills a day (600mg). We are devastated at the mistake and can’t get ahold of our oncologist until Monday. Do you have any knowledge of the effectiveness of the 600 mg? Thoughts or opinions? I’ve been able to find that 600 mg is the minimum dosage for those that can’t tolerate the full 1200 mg. We are scared this is a huge setback in his treatment. Any thoughts would be so appreciated. Thank you.
I can hear the emotions in your post. I will reach out to my sources and see what I can learn about Alectinib.
I can’t thank you enough.
Dr Ross Camidge of University of Colorado (one of the expert ALK researchers) tells me 300 mg twice a day is the licensed dose of alectinib in Japan, while
600mg twice a day is the licensed dose in rest of world. He says there is no convincing evidence that effectiveness is any different for the two doses, so nothing bad has happened. Talk with your oncologist tomorrow about next steps. Best hopes for a good outcome for your brother!
The relief you have provided my family today is indescribable. Thank you so much for using your network of experts and providing me with such a quick response. Thank you for your well wishes to my brother and thank you for sharing your story! Best wishes for continued health for you.
November 2016 my sister started acting odd. She would drive away without shutting her car door. She lost her shopping cart in the grocery and had a panic attack. She became unsteady on her feet and stumbled a lot. She had hurt her neck moving some furniture and I was afraid she may have damaged her spine. I was worried and kept telling her she needed an MRI. I live half way across the country or I would have drug her ass to the ER. Her Husband in a very rude text and phone call told me to butt out of their business. No chance! I kept digging and telling them both she needed an MRI not a chiropractor! On the last visit to her chiropractor he told them he thought she has had a stroke. So finally her husband took her to the ER. They did the MRI and found a brain tumor. When he called and told me I couldn’t even speak to him. She was to have the tumor removed the following day. Thanksgiving Day 2016! I hopped on an airplane immediately and was their the day after Thanksgiving. I didn’t know what to expect! When I walked into the room I wasn’t sure if she would recognize me. I got very close to her face a told he I had made it. At first she thought I was her nurse and then she recognized me. She cried and said I have brain cancer! Can you believe it?! Holding back my anger and fear. I told her to take deep breaths it would help calm herself. After they removed the tumor from her brain they identified it as Lung Cancer Non Small Cell. The next few months were full of WBRT-Gamma Knife-Chemo. Her Brain Cancer was gone and she was so happy about that. But the good news was short lived! Our Mother passed on March 30,2016. My sisters cancer had spread to her lymph nodes, and her back. They gave her only days to live.
I sat with her while they gave her mega doses of pain killers and nerve pills. All I could think was this is in believable! She passed away May 13, 2016. 168 days after her first surgery. I’m sharing this here because she had no symptoms! Not until it had spread to stage 4! She was an x smoker of over 20 years. Don’t let the bullshit You into thinking your lungs are okay after 7 years! Get your cancer screening regularly! I will forever miss my beautiful sister!!!
Ilene, I am so sorry for the loss of your sister and mother. Unfortunately, your sister’s story is not uncommon. The majority of lung cancer patients are still diagnosed after the cancer has already spread to other parts of the body.
We don’t yet have early detection via lung cancer screening for everyone. However, lung cancer screening with low dose CT scans is recommended for patients who are known to be at highest risk for lung cancer. Not all doctors tell qualifying patients about this screening. Learn more here! http://www.lung.org/lung-health-and-diseases/lung-disease-lookup/lung-cancer/learn-about-lung-cancer/lung-cancer-screening/
I am wondering if you could recommend an oncologist located in Seattle and/or Seattle area (we are in Sammamish)? My mother-in-law was diagnosed with adenocarcenoma stage IV (suspicion of mesothelioma) about three weeks ago. She is currently in India but my husband is thinking of bringing her here to confir the diagnosis and for potential treatment. Also, if you do not mind me asking why did you chose Virginia Mason vs. Seattle Cancer Care Alliance?
Thank you so very much,
Hi! Searching for information about my symptoms found this site. I hope you can give me some info about my symptoms while waiting for my doctor’s appointment in a few weeks.
I’m a patient with: total ileorectal colectomy, gastroparesis, vasculitis vs MS, pacemaker to control sphincters, 3 brain lesions, COPD (even though never smoked, and now use a CPAP), cannot walk due to weakness and tremors in legs, and now after a car accident the XRays show a .5cm left 10th rib lung nodule apart from other stuff found on XRays that need CT. The ER doctor said I needed a CT and need to see my Internist ASAP.
So I have my doctor’s appointment but I’ve been feeling a lot of pain shooting from the back going up the neck to the left shoulder and down the left arm with needles like sensation; getting worst. I have been feeling this since before the accident and doctors have treated the symptoms with pain killers, injections to ease pain and laser therapy. My concern is that my father was diagnosed with lung cancer a few years ago and I’m caring for both my parents since it was diagnosed. Right now, this waiting is killing me with anxiety. People, close to me, think that if there’s a chance to have lung cancer the oncologist treating my father might treat me too. I’m about to be 48 years old and with two wonderful kids, young adults (20 & 26), too much responsibility for me and now this, I’m scared… My question would be, can a 10th rib lung nodule cause irradiated pain to the left side, neck, and left arm?
I’m sorry you have so much to deal with. I can hear your anxiety. I am not a doctor, and I have not had bone mets, so I can’t speak to what might be causing your pain. It would be unusual to have a bone met with no primary tumor visible in the lungs, but it has happened. I’m glad you have an appointment with your doctor to get this checked–be sure to ask for a chest CT scan to get more detail on that nodule.
By the way, you might want to consider whether you want your health information posted on a web page visible to the public. If you want to chat with me further, you can email me at jfreeman.wa at gmail.com.
Hi Janet…I am hopeful after reading your story. I have been diagnosed with a 2.8 cm lower right lobe in the middle of my chest closer to the heart, as poorly differentiated carcinoma. I want to know what you can advise and hear others who came across similar case as mine. I completed two CT without contrast two months apart 8 August and 27 September…same results–everything else are okay, lymph nodes okay. EBUS bronchoscopy completed, lymph nodes still okay but lung tissue was described as poorly differentiated carcinoma…awaiting immunohistochemistry evaluation…PET/CT scan completed, 13 October…nothing else showed…still contained in the same location only on the right lower lobe center of the same size…awaiting the rest of the results and discussion with the my team. Any idea, advice, recommendations, opinion or information is greatly appreciated…scared–yes; worried–yes; confused–yes.
I know waiting for all the diagnostic tests to be completed generates a lot of anxiety and frustration. Your team will know more about your treatment options after they’ve completed all the staging and pathology evaluations.
Where are you being treated? If you’re not at an academic cancer center, you might want to find one nearby and get a second opinion.
If indeed all you have is a single cancerous lung nodule, and the cancer has not spread elsewhere, you might be eligible for curative surgery. If you happen to have a more advanced lung cancer, know that there are many new treatments available for lung cancer.
Here are some resources you might find useful.
About lung cancer (Free to Breathe) : http://www.freetobreathe.org/lung-cancer-info/understanding-a-diagnosis/what-is-lung-cancer
• Questions to ask your lung cancer doctor (LUNGevity Foundation): https://www.lungevity.org/for-patients-caregivers/asking-right-questions
• Navigating lung cancer treatment (Bonnie J Addario Lung Cancer Foundation): https://www.lungcancerfoundation.org/patients/portal/handbook/
Best hopes for good news and effective treatment options!
very inspirational Article.Thanks for sharing your story. Good job. Keep it up.
Thank you for updating your journey. We found out 2 weeks ago my father has stage 3 lung cancer, but with 2 spots on his liver. After MANY tests and waiting, hoping to hear of a plan Wednesday. His cancer is terminal, but I want more years with him! Your story gives me hope during a very difficult time. Keytruda is what we are hoping for .. at least that is what we think we want. Seems things change daily and his health has deteriorated since the diagnosis 3 weeks ago. It is hard to see the pain and discomfort.
Hello… I am so happy you are better… Your situation is almost a carbon copy to mine… The beginning is almost so thoroughly identical that it’s frightening… I don’t know what to do, how to feel, what to think… I’m afraid… I’ve had three months of Radiation, and I’m still taking Chemo, but my sense of self is quickly evaporating… It’s taking much strength and concentration to write this much… I’m basically alone, depressed, and my energy is nonexistent… Thank you for sharing your life with us… Take care…
How are you? First of all, thank you so much for taking the time to create your blog!! I echo everyone’s comments, this has been a source of hope and inspiration when other sites are often so bleak about lung cancer. Please! please! continue to write. Thank you! I really, truly appreciate this blog so much.
My mom was diagnosed with NSCL last year. She used Tarceva for about 9 months before and its no longer effective for her. She just started her first round of chemo. She lost nearly all her hair in a week. She keeps a brave face, I think it’s for us “kids” (I’m 34). I come to your blog from time to time to read and re-read your posts for hope. Thank you again.
Hi everyone, not sure if anyone can give any opinions on my senario.
I had a Lobectomy last Nov. 2017. I’ve had 2 CT scans since.
I have 2 nodules on my lower right lobe. one is 2mm and the other is 5mm.
Not sure if i should worry? another swcanin 6 months.
Just a heads up that this is a public site, so anything you post here can be seen by anyone visiting the site.
Lung nodules are relatively common, and can be caused by many things (for instance, old viral infections healed by your body). Yours are too small to be biopsied easily, so your doctor is just watching them to see if they are a cause for concern. I know it’s tough not to worry, but all you can do is wait–nodules aren’t cancer unless a biopsy says they’re cancer. Try to relax and enjoy the holidays!
Hi, my mother 68 diagnosed with nsclc and FNAC confirmed it. Doctors say it in the very beginning and need not to worry. No any physical symptoms. EGFR results awaiting. Hope she will be well enough for the rest of her life. Will update her course of medical attention. Best wishes to you all.
Best hopes your mom has a good response to treatment!
Hi, Just found your story and it really helps, i was diagnosed with stage 3 lung cancer in June 2018, i have had chemo and radiotherapy and my tumor has shank by 50% . your Journey gives me hope . Thank you thank you thank you x
So glad my story is encouraging for you! Hope you don’t have to deal with cancer treatment again.
Just found your blog. I am just diagnsed with ALK+ LUNG CANCER in Nov 2019. Reading your story is very helpful to those who are like me( just starting to deal with lung cancer. Please continue. Wishing you health and wellbeing.
Amazing! Thank You so much for sharing a inspirational journey. Take care.