Aside from LCSC and GRACE:

When you were first diagnosed, where did you find information on NSCLC?

What was the best resource you could find in terms of education about the disease?

Did anyone tell you about clinical trials and would you have been interested in learning about clinical trials?

What about treatment options? Aside from your doctor, how did you learn about the treatment options available for NSCLC?

what with chemo brain, you expect me to remember almost 3 years ago?

No, really, my first months of flailing around I mostly relied on what my doctors recommended and the information they gave me on treatment and staging. I found LCSC and Grace some months later - or at least that was when I joined. I'm sure I was looking at less stellar sites on the internet, along with NCI and Mayo, etc. The clinic I went to had thick booklets from ACS; I skimmed them at least.

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(photo: me in '61)
Female never smoked, 52 at diagnosis, otherwise healthy
09/08: false cardiac event = finding of 3 cm tumor upper right lobe plus two .5 cm nodes elsewhere on chest x-ray at ER
09/08: CTScan with IV contrast confirms.
10/08: Pulmonary referral for EBUS - bronchoscopy - confirms NSCLC - adenocarcinoma, with bronchoalveolar features
10/08: PetScan - further confirmation, classified T1N0MX (false negative) VATS scheduled.
11/08: full open surgery - revised to T4N2MX with positive spread to 2 lymph nodes, removed upper lobe with 3 cm tumor and partial mid lobe with (1) .5 cm tumor, 3 lymph nodes on trachea - 1 lymph node and margins negative.
5 night hospital stay.
12/08: Port-a-cath implanted
12/08: Brain MRI and hearing test - good other than minor high end loss in left ear
12/08: start (4) 21 day cycles of chemo - day 1 cisplatin and gemcitabine, day 8 gemcitabine alone, day 15 off - tolerated it pretty well - a little hair thinning and follicle inflammation, some ringing in ears and vertigo, much fatigue, and nausea. Kept my taste-buds almost intact.
02/27/09: completed 4 cycles of chemo!
03/03/09: removed port-a-cath
03/27/09: tattooed for radiation
03/30/09: start radiation (IMRT) 5x/wk for 6 weeks - fatigue, moderate esophagitis
5/08/09: completed treatment
6/22/09: NED
9/18/09: Recurrance in the liver and scattered in lungs. No symptoms. Rx Tarceva.
9/25/09: start Tarceva
11/20/09: clear lungs, shrinkage in liver.
2/24/10: still good on Tarceva
6/3/10: graduated to 6 month scan
12/9/10: new 6 cm tumor in liver
12/28/10: stop Tarceva
1/10/11: carbo/alimta/avastin
3/11/11: scan after 3 cycles 72%ish met reduction, stay the course
5/26/11: scan after 6 cycles, stable.
5/31/11: begin Avastin maintenance.
8/17/11: met growth, stop Avastin. Start Alimta.
10/25/11: met growth, stop Alimta. Wondering what to do next?
1/24/11: start hospice

I searched the internet and the information out there was horrible. I was convinced that I was one of the ones that was not going to make it. I read every horrible statistic out there - did not believe my doctors, I thought they were lying to me.

Then I found Lungevity - and I spent literally hundreds of hours reading the old old old posts and I found a new family - which led to hope. From there I found cancergrace and I did not need anything else. The family and friends I have found here support me and each other through thick and thin - and if you stumble on this place in your hours of "need" - you will be welcomed.

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5/5/09 Bad Cough - sent for xray
5/6/09 CAT SCAN
5/8/09 Pulmonologist - not good ordered bronch
5/14/09 Bronc 5/19/09 Breathing test & Results - NSCLC (Adenocarcinoma 3cm)
5/22/09 PET Scan - 5/27 referred to surg & onc
6/2/09-met with surg & onc. They say there are two spots. One small on left lung and one larger one on right lung 3.6 x 3.2 cm - they are pretty sure and approaching it as if it were two separate cancers staging the right at II and the left at I.
June 15 - RML removed - Pathology - margins clear and nodes clear. June 25 follow up with surgeon - doc agreed to stage I since it appears he got it all - June 30 return to work
July 7 Oncologist says Stage 1A - we don't recommend chemo for this stage
Aug 17 - surgery - again took ULL and some nodes -
Sep 8 to onc - Both sides IA - no chemo just watch closely
Dec 15, 2009 - CT Results - NED
March 10th, 2010 - CT Scan - Results - NED
June 15th, 2010 - XRay - Results - NED
Sep 15th 2010 CT Scan - Results - NED
Dec 2010 XRay Only - Results - NED
Dec 2010 MRI - Results - Clear
March 2011 - CT Scan - NED
June 2011 - XRay Only - NED
Sept 2011 - Scan & Vampires - Scared to death!!!!

I guess that I was lucky. I did find some useless sites, but I spent most of my internet time looking at info. from major cancer centers - Memorial Sloan Kettering, M.D. Anderson Cancer Center - both Houston and Orlando, Mayo, etc. I also found specific info. re: thoracic surgery, procedures, and pictures. For me that was very helpful, but might bother some people.

Muriel

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Dx NSCLC 5/03. Surgery UR lobe. Staged as 1B. Chemo (taxol & Carbo)9/15/03 - 11/13/03. Wonderful CTs until Nov 04. Surgery 11/27/04, again staged as 1B. Chemo (Cisplatin and Gemzar) 2/05 to 6/05. Good CTs and PET since chemo.

I got mine from all over, major cancer centers, medical journals reports on trial studies, magazine and newspaper articles and such. I especially dug into the surgery options and adjuvant chemo trials.

I think I was just shocked enough at the diagnosis and realizing that I was clueless on the subject of lung cancer to the point that I wanted lots of hard facts before anything else.

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Bud

Long distance cyclist and lung cancer survivor
56 years old at time of diagnosis in 2007, now live in Crowley, Tx
Nov 2007 - Tentatively diagnosed as NSCLC stage I from CT scan
Dec 2007 - Upper left lobectomy, biopsy showed one cancerous lymph node, changing the diagnosis to stage II (squamous cell)
Feb to Apr 2008 - Three rounds of cisplatin and gemcitabine
Apr 2008 - chest x-ray, NED
May 2008 - brain mri, clear
Jul 2008 - CT scan, NED
Dec 2008 - CT scan, NED
June 2009 - CT scan, NED
Jan 2010 - CT scan, NED
July 2010 - CT scan, NED
June 2011 - CT scan, NED
May 2012 - CT scan, NED
December 2012 - CT scan, NED. I am now a 5 year survivor!

June 2009 - Wife Rose diagnosed with breast cancer
Stage III IDC
Sept 2009 - Finished 4 rounds of chemo (AC)
Nov 2009 - Surgery
March 2010 - Finished 12 weeks of weekly Taxol
August 2010 - CT scan, NED
August 2011 - Checkup, NED
August 2012 - Checkup, NED
The rest of my story is at:

http://www.lungevity.org/l_community/vi ... hp?t=38841

My blog - uneasy-rider.com

I flailed around on the internet, horrified at most of what I found. I'm still not beyond the fear of that "3 to 5 years" even tho I see evidence of so much survival beyong that. My cancer was so oddball with a "thickening" in the chest wall and no tumor in the lung or anywhere else, the major sites didn't offer me much. I had to depend on my doctors, especially at MD Anderson. It was a couple of months before I happened on LCSC and Grace. They were my lifesavers.

Judy in KW

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Cytology report on fluid removed from lung after pleural effusion and pneumonia Sep 07 showed adenocarcinoma cells. Dx IIIb NSCLC Oct '07 at MDACC, Orlando. Fol 6 rounds Taxol/Carboplatin/Avastin and 2 Avastin, CT/PET 4/1/08 pleural thickening gone and no active cancer cells. 11/3/08 STILL NEVD. CT/PET/MRI 5/4/09 Cancer back, still in the pleura and chest wall, small amt of fluid, all in left lung.
5/11/09 Start on Alimta every three weeks.
7/13/10 Had Alimta on road in Corning NY.
8/24/09 Scans show some improvement. Continue on Alimta.
9/14/09 Chemo on road in Mt Holly NJ.
10/6/09 Started regular Alimta infusions in Key West.
11/3/09 CT and PET scans showed significant improvement. Some issues already resolved.
2/3/2010 No evidence of residual or recurrent disease. NED! Stay on Alimta.
5/6/10 Am considering myself still NED until/unless proven otherwise in July. Rabid radiologist thinks he sees something suggestive of similar to some abdominal cancer. No light up on the PET. Am hoping for the best. Stay on Alimta and scan in 9 wks instead of 3 mos.
7/8/10 Chest CT unchanged (NED Feb '10). Infiltration in the region of the omentum is probably slightly more prominent than before. Diverticulosis requiring antibiotics.
Jul, Aug, Sep, continued Alimta in Corning NY, Portsmouth OH and Mt Holly NJ.
10/14/10 Chest CT unchanged from Feb '10. Findings likely representing progressive nodular peritonal carcinomatosis in the midabdomen. Treatment changed to Tarceva started in Nov.
12/15/10 Chest CT unchanged. Abdomen changes compatible with peritoneal carcinomatosis again identified with mild progression noted.
3/16/11 CT chest unchanged. CT abdomen progression ascites (fluid). Progression of soft tissues nodularity on the peritoneal surface anteriorly with diffuse omental involvement.
4/13-15/11 Hospitalized at MDA. Removed 4 1/2 litres (8-9 lbs) of fluid from abdomen 4/14. Started on taxotere before release on 4/15.
5/16/11 Hospitalized for fever, neutropenic. Treated with intravenous antibiotic and antiviral. Given blood transfusion. Note that KW Cancer Center did not give me my Neulasta shot after my chemo on May 6. Onc had me cancel my 5/26 chemo until after my scan on Jun 6. Was discharged on oxygen. Test w/Dr Gerth 5/26 indicated I could go off sitting and sleeping O. Will do walking test 6/2.
6/2 Did not get requisite numbers on walking test. Left for Orlando 6/5 still on oxygen.
6/6/11 MRI normal; CT stable. Taxotere and Neulasta at MDA 6/7 and 6/8.
6/13/11 Appointment with Dr Olham in KW. Off oxygen week of 6/16.
8/8/11 CT scan showed stable with perhaps some lessening of fluid. Stay on Taxotere.
10/10/11 CT chest still clear, CT abdominal lining stable. Stay on taxotere.
12/19/11 CT chest clear, CT abdominal lining stable, MRI clear. Stay on taxotere.

that was how I found LCSC!! Looking for info on Tarceva!!! these great folks helped me out!

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April/03 My Wife Deborah, age 46, diagnosed adenocarcinoma NSCLC
1/20/2006 Admitted to hospital Respiratory distress
1/23/2006 Ran to the light and is waiting for us to be rejoined in the Kingdom Of Heaven Her journey is Over but mine lingers on for Now!!!
4/23/07 DEb is joined in Peace by her Puppy Dawg Daisy from Cancer
8/30/07 Got new Pup named Mocha!!

"No matter hnow much it hurts, No matter how alone you feel, Your friends will help you get through anything!!"
Scrubs!!!!Yes the comedy show!!!

The Reason I advocate
If you would like to see our family photos Click on this link!
http://deborah-wallin.memory-of.com/

My memory-of Link is good to go now if you want to see it!!

Once my oncodoc put a name on it, I binged it and found more info than I could read. I read alot. I didn't find out about LCSC until April '11. It was the whole back cover of Cancer Fighters Thrive quarterly. American Cancer Society has a wealth of knowledge too. I have'nt looked at cancer grace yet but I will.

Thanks for starting this thread Katie!

First my primary care doctor gave me the news and immediatly referred me to a Thorasic surgeon. He told me his conclusions. Next we decided to get another opinion. Everyone I knew that had lung cancer didn't have surgery. Ironically, I thought removing a lobe was very dramatic and going to extremes. Little did I know that removing it is good news!

The folks at Mayo clinic were amazing. I highly recommend them for anyone needing further information.

I did not go to the Internet. I was painfully aware of the potential to scare myself to death. I relied on human interaction.

Once Mayo Clinic confirmed the dx, I flew home and in 2 days was in the hospital having a lobe removed!

I didn't find Lungevity until long after my treatments, but am so glad I did.

Judy in MI

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6/07 DX NSCLC, Left Upper Lobe wedge resection: Stage 2.3/4, (2B?) Adenocarcinoma, measures 2.5x1.5x1.1cm. Involving visceral pleura but not through it. 5 rounds chemo, carboplatin and Taxol. Subsequent scans NED.

1/11 3.5 mm node found. 10/11 CT node now 8 mm, and new 6 mm node. 11/11 CT Pet shows slight uptake. 1/4/12 Biopsy - Pneumothorax complication. 1/14/12 Lobectomy of upper rt. lobe. NSCLC Adenocarcinoma in situ, nonmucinous (bronchioloalveolar carcinoma) 1.4cm involves pulmonary parenchyma.
3/14/12 Begin 4 cycles of Cisplatin/Navelbein, with Neulasta shot
4/6/12 Chemo changed to Carboplatin/Navelbine without Neulasta shot. Reduced chemo by 50% due to intolerance.
7/5/12 CT scan is clean, NED for lung cancer! There are issues with liver and stomach that will be investigated but not believed to be because of cancer. Wait and see!

*Avatar was taken 7/3/12 on our way out to see the Fireworks on a friends boat on their lake!

Mom dx SCLC 1/96, passed 10/19/96, age 62
Dad dx Brain cancer 4/87, passed 6/87, age 57
Sister dx Brain cancer 4/83, passed 12/83, age 25

In order of usefulness as I began to come up to speed:
1. CancerGrace.org
2. inspire.com
3. Google (many & varied sources on specific subjects, including the above two, & LiveStrong's & Sloan-Kettering's sites)
4. NIH PubMed