Home » My Lung Cancer Journey

My Lung Cancer Journey

Since most people reading this will not know my lung cancer history, I thought I’d put it in a post to help you see the ups and downs of living with lung cancer. Here’s the Readers Digest version by date entries, sans the roller coaster of emotions and periodic scanxiety.  If you’d like to read my journey in story form, it’s in my blog post titled A Lung Cancer Epatient Story.

In early 2011, I was in good physical shape, about 30 pounds overweight, eating healthy and exercising regularly. After tolerating a nagging, slight cough for a few months, I visited my primary care doctor at Virginia Mason Seattle in early March 2011 and went home with a Z-pak of antibiotics. A few weeks later, I along with my husband and son returned from a trip abroad with respiratory infections. The guys recovered in a couple of weeks. I kept coughing up thick green gunk. When I coughed up blood, I went back to the doctor, who gave me another Z-pak. After another few weeks, I was still coughing heavily, so the doctor ordered a chest x-ray. Before I’d left the lab, she ordered a CT scan. By the time I arrived home from the clinic (a 10-minute drive), she called me. The radiologist saw a mass in my lung that looked like a carcinoma. Two days later, a Friday, I saw a pulmonologist (lung specialist) who performed a diagnostic bronchoscopy. I had a very anxious weekend waiting for the pathology results. The pulmonologist called me Tuesday evening, May 10, 2011, with the news. I was 55 and I had lung cancer.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Update August 13, 2013:
PET-CT scans for April, June, and August 2013 (as well as April brain MRI) still show No Evidence of Disease. Woohoo! Having completed 10 cycles on Xalkori without progression, I now will go to Denver at 8-week instead of 4-week intervals, and have labs drawn at my home clinic between Denver visits.

Update December 3, 2013:
PET-CT scan still shows No Evidence of Disease.  October 2013 brain MRI is clear as well.  I’ll ride with NED as long as I can.  It’s a bit disheartening that the AP26113 clinical trial for ROS1 has been closed–I now have no other ROS1 clinical trial I can enter when Xalkori stops working–but Alimta is still an option for follow-on treatment.  The longer I can stay NED, the greater the chance that a new treatment option will become available.

Update January 28, 2014:
CT scan still shows NED.  Could not have PET-CT scan this visit due to insurance approval snafu. Hopefully in another 8 weeks I’ll have a PET-CT again.  Given my cancer grew so aggressively in previous recurrences, I think PET technology might catch earlier than a CT scan.  I stopped taking gabapentin; although my sleep is now screwed up again, the edema has gone down.  Some days I can skip both the Lasix and compression stockings and my legs are still comfortable.

Update March 25, 2014:
PET-CT still shows NED, plus brain MRI is clear too. Switched to Ambien to help with sleep.

Update April 25, 2014:
Had another brain MRI after 2 weeks of headaches. Fortunately, my brain is still unremarkable.

Update July 15, 2014:
Still dancing with NED–this Xalkori is great stuff! Stopped taking Ambien for sleep–apparently it make me anxious. I sleep OK as long as I exercise.

Update September 9, 2014:
20 months NED on Xalkori for ROS1 NSCLC. PET-CT and brain MRI are both clear. Went back on Ambien to help with sleep, seems to be working.

Update February 2015:
Still NED!  However, I now have a pulmonary embolism (PE), which is a blood clot in my pulmonary artery.  Evidence of this clot can be seen on my PET-CT scans since July 2014, but it wasn’t fully diagnosed until December 2014 because it’s so subtle.  For all we know, it’s just a pile of all the fibrin sheaths knocked off my port catheter using Cathflow over the past three years.  The PE partially explains my shortness of breath on exertion. I’m now on Warfarin as a blood thinner, and will probably be on blood thinners for the rest of my life.

Update June 23, 2015:
Still NED!  I did injure my left shoulder at the end of May (see my blog about Pavement Diving Is Not My Best Event). The bone bruising was worse than it might have been if I weren’t on blood thinners, but it’s healing.  I get to have my left arm in a sling for four weeks (or longer), and will have physical therapy.  Still, a minor bump in the road compared to cancer.

Update Oct 5, 2015:
Still NED!  Turns out I actually broke my shoulder back in May (cracked the socket and broke off a chip), but physical therapy has given back my full range of motion. I’m now working on rebuilding strength.  Probably won’t be able to sleep on my left side ever again, but I might be able to play wallyball again someday, if I’m strong enough to avoid injuring either arm (my right shoulder is also weak, due to radiation of the right brachial plexus in 2012).

Update Dec 2, 2015:
Still NED. Exploring ways to deal with fatigue.

88 thoughts on “My Lung Cancer Journey

  1. 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!


  2. Hi Janet,
    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 🙂


  3. 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?


      • Gray,
        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


  4. 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.


  5. Dear Janet,

    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?

    Best wishes,


    • Hi M,

      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.


    • M,
      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.


  6. 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.


  7. 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:


  8. Janet
    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!


  9. 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.


  10. 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

    Liked by 1 person

  11. 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


  12. 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.


  13. 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.


  14. 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


    • 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.


  15. 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.


  16. 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.


  17. 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.
    Regards, Dace


    • Dace,
      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.


  18. 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


  19. 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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  21. 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.


    • Hi Nancy,

      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!



  22. 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.

    Liked by 1 person

    • 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.


  23. 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.


  24. 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


    • Hi Linda,

      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!



  25. Hello Janeh
    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 😦


  26. Hi Janet
    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.


    • Hi Jenny,
      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.


  27. Dear Janet,
    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.


    • Hi there,

      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.


  28. 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


  29. Hello Gary,

    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.


  30. Dear Janet,
    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


  31. 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…


  32. 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.


  33. Dear Janet,
    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.



  34. 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!


  35. Pingback: A Brief Description Of Lung Cancer | Mesotheliom Lawyer

  36. 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 !


    • Hi Kristin,

      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.


  37. 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


  38. 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!


  39. Janet,
    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:
    Vancouver WA

    FEW LINKS ON PV-10 (fyi: Rose Bengal is made of coal tar)





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