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My Cancer Journey — UPDATED 03/05/2011

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"You do have lung cancer, adenocarcinoma, and it doesn't look very good." Those were the words of my thoracic surgeon the morning of September 1, 2006, after a four-hour exploratory surgery the previous evening. The news was not a complete surprise. A chest x-ray and CT scan in mid-August had revealed a large pleural effusion in my right chest, the obvious cause of the nagging cough and lack of stamina I'd experienced for several weeks. And though no cancer cells were found in the fluid that was drained, and I hadn't smoked for 43 years, I knew that cancer was more likely than the "something else" I'd pinned my hopes on.

So the surgeon's words were not really unexpected, but my reaction to them was. For reasons I don't fully understand, in that instant the apprehension I'd harbored for several weeks suddenly vanished, my view of life seemed to change, and I felt more "connected" than I'd ever felt before. Anyone who's interested in that or the other stuff running through my head in September 2006 can look here:


More on my earlier years is located at...


...and a graphical summary of my treatment benefits and side effects is posted here (rotate the chart 90 degrees clockwise and zoom up to 100 percent):


The following is a fairly detailed chronology of my cancer journey up to the present day. I've received very good medical treatment (three cheers for Medicare/Tricare) — my doctors are in sync with my positive outlook and understand my preference for quality of life versus longevity, I have great support from my family and friends, and for the most part I've had reasonably good response to treatment without unacceptable side effects. Since lung cancer didn't enter my life until age 71, I don't feel it's cheated me out of any opportunities that I hadn't already squandered through previous poor choices or inattention, and I'm looking forward to my remaining years and whatever comes next.

JUL 2006: Good health except Meniere's Disease since 1994. Age 71, former Air Force and airline pilot, smoked 6 years 1957-1963.

AUG 2006: Developed persistent dry cough, x-ray showed fluid or mass around right lung, 1 liter drained in outpatient thoracentecis, had CT scan, loculated fluid or mass still visible, unable to drain any more fluid, no cancer detected from fluid analysis. Exploratory thoracoscopy and thoracotomy on 8/31/06.

SEP 2006: Home from hospital 9/4/06. Diagnosis: NSCLC Stage IIIb moderately-differentiated adenocarcinoma (2 clinically separate tumor nodules middle lobe right lung with invasion through visceral pleura into parietal pleura; one nodule resected for pathology; massive bloody pleural effusion, presumed malignant, with fibrinous exudate stranding the pleural cavity). Met with medical oncologist 9/12/06 and radiation oncologist 9/19/06. Had brain MRI plus bone scan 9/20/06 and port installed 9/22/06. Chemo to begin early October. MRI and bone scan were negative, so no radiation for now.

OCT 2006 - JAN 2007: Began first chemo cycle on 10/3/06 with combination of Taxol, Carboplatin, and Avastin, plus standard premeds. Neulasta injection the next day. Given prescription for Ativan to use at home. Desired regimen: repeat every 21 days for a total of 6 cycles, then stop the Taxol/Carbo and continue with Avastin. Infusions were trouble-free; only noticeable effect was drowsiness and slurred speech during the Benadryl premed, which gradually faded throughout the remainder of the session. Post-infusion side effects were relatively minor during cycles 1 thru 4, but more pronounced in cycles 5 and 6. No nausea at any time, but still took Ativan the first few days of cycles 1 and 2 as instructed. Hair loss began two weeks after the first infusion. Most predictable effect: Fatigue, which began the second day after infusion and continued thru the first week and sometimes beyond. Other effects were sporadic during the cycle but generally concentrated in the first two weeks. These included: Constipation, usually resolved with stool softener at bedtime and prunes in the morning. Tinnitus (ringing) in both ears, rather loud at times, on top of "normal" tinnitus which I've had 24/7 in left ear due to Meniere's Disease the past 13 years. Increased drainage in tear ducts, nasal passages, and throat at random times throughout the day. Effect similar to dry eye syndrome, in which eyes feel dry and scratchy in spite of tear flow and vision is blurred. Mouth tissues and tongue irritated and sensitive, causing loss of taste with many foods and discomfort eating spicy foods or food with hard edges. Sensitive skin, in particular: thoracotomy and port incisions pinkish/touchy and irritated by clothing sliding over them; blisters, rashes, sore spots (hand-foot syndrome) appearing on feet in a seemingly spontaneous and random manner. Joint and bone discomfort during cycles 1 and 2. Shortness of breath, not a problem during cycles 1 thru 4 but very noticeable during the second and third weeks of cycles 5 and 6 when first standing from a seated position. Discussed with onc before cycle 6 chemo session. No adverse changes in blood pressure, blood counts, or lung sounds that would account for SOB. Possibly a cumulative effect of chemo over the past 3-1/2 months. Neuropathy, mainly in the feet, which began a few days into cycle 6. Feet numb with pins and needles, and some weakness in legs. Walking painful and balance poor — using a walker helped. Onc called in a prescription for Neurontin. Significant improvement after 2 days, walker no longer needed.

FEB 2007 - SEP 2007: Treatment with Avastin only. Received 12 treatments at 21-day intervals. No side effects from the Avastin-only therapy other than generally slow healing. Residual side effects from the Taxol/Carbo gradually decreased or resolved.

OCT 2007 - JAN 2009: Treatment with Tarceva began 10/10/07. Moderate rash started about day 5, mild diarrhea and fatigue about day 7. Introduction to Tarceva was complicated by a sudden outbreak of shingles which began a couple of days before starting the Tarceva. Discomfort from the shingles was minimal, possibly because of the Neurontin which I was already taking for neuropathy. By the second month, most side effects had stabilized — diarrhea mild and sporadic (no meds needed), fatigue mild, rash on head and upper body moderate and kept under control with Cetaphil lotion, Clindamycin gel, oral Doxycycline, and staying out of the Hawaii sun. For scalp, T/Sal shampoo or Johnson's Baby Shampoo supplemented later as needed with application of OTC scalp relief product (clear nongreasy liquid with same active ingredient as T/Sal). By the sixth month, split/sore fingertips finally under control using Cordran tape for flareups and Gloves In A Bottle for maintenance.

FEB 2009 - MAR 2009: Treatment with single-agent Alimta. Except for some leg swelling, side effects were very mild. Unfortunately, there was also some disease progression. See detailed log here: http://tinyurl.com/clqz7w

APR 2009 - FEB 2010: Old port which malfunctioned after 30 months was replaced with a PowerPort on 04/03/09. Treatment with combination of Cisplatin and Alimta on 04/07/09. This was a 3-day routine — B-12 injection and IV hydration, premeds (steroids and antinausea), both chemo agents, and more hydration on 1st day; additional IV hydration and a Neulasta injection on 2nd day; still more hydration on 3rd day; Decadron tablets and Emend capsules for 3 days clustered around infusion day. Left leg swelling subsided, but there was some new swelling in left arm. Received a third Doppler ultrasound exam, still negative for clots. Changed to a stronger diuretic (Lasix vs. Dyazide), which helped. Received echocardiogram on 04/14/09 to determine if heart insufficiency could be causing the edema; no problems detected. Fatigue, nausea, hearing, and vision side effects from Cisplatin were worse than from any previous therapy, and peripheral neuropathy plus hand-foot syndrome entered the picture a week after the infusion. Cisplatin replaced by Carboplatin, and the Carboplatin/Alimta infusions (less than 2 hours total including premeds) began on 04/28/09. Considerable fatigue the first half of each cycle with some mild edema at random times; shortness of breath and anemia (low and decreasing red blood cell, hemoglobin, and hemocrit numbers) more apparent after 3 months on Alimta/Carboplatin, but no other noticeable side effects. Iron and erythropoietin levels checked good, pulmonary function test did not reveal any problems other than some reduction in flows and diffusion capacity, so the worsening anemia is being attributed to bone marrow damage from extended chemotherapy. White blood cell and platelet counts have also edged into the below-normal range. Stopped Carboplatin due to neuropathy and further deterioration of red blood cell counts; resumed Alimta alone as of 11/24/2009. Feeling better, and blood counts are slowly improving.

FEB 2010 - PRESENT: Began treatment with Navelbine on 02/16/2010. Planning weekly infusions for 3 weeks, then a week off. Third treatment canceled due to low WBC counts — received Neupogen injections instead. Also received prescription for Reglan to counter indigestion and constipation. Resumed Navelbine schedule, but at a reduced dosage. Again, third treatment canceled and Neupogen received for low WBC counts. Next came a 4-week chemo "vacation" for hernia surgery :x — resumed chemo on 04/13/2010 on a two-weeks-on, one-week-off schedule. Blood counts are slowly recovering, and side effects from the Navelbine are the mildest of any treatment I've had to date. :) But on 03/02/2011 received another brain MRI because of new imbalance problems and a short period of garbled speech. This revealed extensive brain mets, so 10 sessions of WBR were begun on 03/03/2011. :x Continuing Navelbine for now.

TEST RESULTS AFTER START OF TREATMENT: 11/8/06 chest x-ray: Situation stable. 11/28/06 CT scan: Existing masses/densities/lesions have decreased in size and no new areas of concern have developed. 12/16/06 chest x-ray: Stable, no adverse changes. 1/30/07 CT scan: All existing masses/densities/lesions are stable and nothing new of concern has appeared. Right hydropneumothorax somewhat smaller with slightly less fluid in the right pleural space. Cleared for Avastin only. 4/2/07 CT scan: Another spurt of improvement after 3 cycles of Avastin only. Less fluid in right pleural space. Existing lesions are stable or somewhat smaller. None are larger and no new areas of concern have appeared. 6/25/07 CT scan: No significant change from previous scan. Persistent right hydropneumothorax. Continue Avastin, scan again in September. 9/21/07 CT scan: Pneumothorax "resolved." Loculated pleural effusion smaller (now "mild to moderate"). Onc's tap test on right side more like the standard hollow log than the previous wet sack. Various nodes, nodules, densities in region remain stable. Nodule in right middle lobe somewhat larger (2.8 x 3.8 cm) but still smaller than on 11/28/06 and 1/30/07. Will receive PET scan to see what activity, if any, is present. Stay on Avastin for now. 10/1/07 PET scan: Continued hypermetabolic activity in right lung and pleura. No abnormalities in left lung or pleura. No liver mets, no adrenal mets. Stop Avastin, begin Tarceva. 12/7/07 CT/PET scan: Almost identical to previous scan — persistent hypermetabolic activity in right lung and pleura, no suspicious areas elsewhere. This stability along with better lung sounds (stethoscope and tap) plus increased energy and stamina point to modest overall improvement. 2/6/08 CT scan: Stable to slightly improved. 5/1/08 CT scan: Stable, no evidence of metastatic disease. Energy and stamina continue to slowly improve. 7/28/08 CT scan: Stable except for new 4 mm nodule on the front periphery of the right upper lobe. 10/21/08 CT scan: The 4 mm nodule has grown to 5 mm, and a few other 4-6 mm nodules have appeared in the right lung. Feeling good, will stay on Tarceva for now. 01/21/09 CT scan: No evidence of mets, but new nodules in right lung have continued to grow. Stop Tarceva, begin Alimta. 03/24/09 CT scan: Some additional growth of nodules in right lung, and several new nodules (2-3 mm) have appeared in left lung — there's no longer any doubt that we're Stage IV. Added Cisplatin to Alimta, then replaced Cisplatin with Carboplatin. 05/28/09 CT scan: "No significant changes" — after several months of slow progression, stability has been achieved once again. Continue Carboplatin/Alimta. :D 08/03/09 CT scan: Right lung stable. Slight increase in left lung nodules, but not enough to be considered progression. Continue Carboplatin/Alimta. 08/10/09 brain MRI and bone scan: Repeat of scans done in 2006. Still no evidence of brain/bone mets. 10/26/09 CT scan: Multiple small nodules remain visible in both lungs. Some have increased about 1 mm in size since August, about the same increase that occurred between May and August. Continue Alimta, but stop Carboplatin due to side effects. 02/03/10 CT scan: Continued progression of nodules in both lungs, but no evidence of mets outside of chest. Stop Alimta, begin Navelbine. 05/17/10 CT scan: Nodules in both lungs are smaller, and there are no suspicious findings elsewhere. Continue Navelbine. 08/10/2010 CT scan: Some additional tumor shrinkage in right lung, left lung stable, abdomen and pelvic area continue to be "unremarkable." 12/01/2010 CT scan: Stable and unremarkable! :D 03/03/2011: Brain MRI reveals evidence of "extensive intracranial metastatic disease" and is highly suspicious for leptomeningeal carcinomatosis. Yuk! :x

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  • 1 year later...

Let me begin with after reading your story..,it gives me hope for dad. I am so happy for you-not that you have cancer-and not that you have struggled.,but happy that you have been fighting and winning against this mean disease.

Your story is so similar to my dads. He is retired Air Force, had quit smoking (1983) and had a persistant cough. His cough started 7 years ago though after his bypass surgery,and his doctor has been treating him for bronchitis. 3 weeks ago he started coughing more than ususal and went to an allergy specialist,no allergies.,went to his doctor-they did tests-his doctor said "well you have a tumor or mass on your lung so if you have fluid,we can't tell so come back in 6 weeks!" Dad,trusting his doctor was going to wait until he started coughing up pink stuff and he got scared. (dad has had his lung drained after his heart surgery 7 years ago twice)

You answered my post and I am so thankful that you did. It eases my fears tremendously and reading your story does even more so.

I love your positive attitude and want you to know that you most definitely will be in my thoughts and prayers. I am on my way to go in the living room and let my dad read your story...

Thank you for taking the time to take part in Lungevity...

Take care and continue to fight fight fight

Meeko :)


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  • 6 months later...

Hi Ned,

Just stopped by to read your WHOLE story, and what a story it is. It's so inspiring to read such story. I hope you are feeling well, and doing well! Thanks for being such a presence and help to me as I get to know this place better.


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