Much like some other first time posters, I am not 100% certain I belong on this site. My mom passed away 7 years ago (at the age of 54) from lung cancer and I stumbled upon the community when looking for ways to support lungevity. I would just like to say how wonderful it is that this community exists. Prior to my mom being diagnosed in Feb 2004 I was untouched by cancer. She remained so positive through all of the diagnosis' that we didn't even fathom her passing away (May 2004). I remember feeling lost and confused by all of the technical terms (so much that I can't even recall all of them to put them in my "signature" below). This site would have been a perfect way for me to express concern and learn more about the process from real life experiences. One of the hardest things at the time of the diagnosis was that everyone would ask me if my mom smoked. She did and when I would tell friends and family they would almost brush off the pain we were experiencing, as if she deserved it.
I am finally comfortable enough to share and volunteer. The healing process has been a rollercoaster of emotions and for so many years I was simply bitter (to be frank). Reading your positive stories and emotional support to each other is very uplifting and encouraging. It takes me back to those final days in my college experience (she passed away two weeks after I graduated) that I have refused to talk about for so many years. I certainly could have used a site like this back then!

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Lost my mom to lung cancer in May of 2004.

Welcome! So sorry to hear that you lost your mother to this awful disease. You've been touched by lung cancer, so you certainly belong here.

As Katie likes to say, when it comes to lung cancer, we're cause agnostic here; we don't care how anyone got lung cancer. We know that too many never smokers also get lung cancer, that no one deserves it, and that more needs to be done to detect and treat it.

We have a wide variety of people here, from survivors to caregivers to people who, just like you, have lost love ones to lung cancer. Again, welcome, and I look forward to seeing more posts from you.

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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

welcome and of course you belong here. i havent been a member here myself very long but it does seem like a caring bunch of people which is so awesome. i actually decided to join a few forums cause when i was told i had lc i know what i went through and the lost feeling and there wasent many places i found that were helpful so i was hoping i could at least help in some way so maybe even one person didnt have to go with some questions unanswered. i know you said it has been 7 years since you lost your mom and im very sorry for that loss but if you still ever need to talk you can post here or inbox me i would be more than happy to lend an ear. i have lost several people in my life to other cancers and i know its never easy .

I also welcome you here! You certainly do belong here. We're so glad you joined! Ah...............your Mom was so young. Breaks my heart. I was diagnosed at age 52. I'm so grateful to still be here.

I so wish I had found a site like this when my Mom was diagnosed with LC. She died in 1996. Like you, I was angry and bitter. I was only 40 when she died, and I needed a place like this. I'm so glad I found it now. Unbelievable that I got the same disease.

Whether we smoked or not is irrelevalent. Not every smoker gets lung cancer. Not every non-smoker gets it either. But this we know....lung cancer is a killer. They don't know enough about it....and they need to know more because too many people are getting it, and too many are dying.

I'm so glad you joined. If you wish to get into a daily chat, we do a daily AIR where we open the windows to fresh air and chat. We would welcome you there if you want to get to know us better. It's fun and just a nice way to get to know each other.

MI Judy

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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

Welcome, you are certainly welcome. I have to sit on my anger everytime I hear did (you/she/he) smoke. I explain that 30% of the people who get lung cancer never smoked. I also add a warning not to ask people that question. It's like asking someone with stomach or colon cancer if they ate too much. That seem to get through.

There is no time limit on grieving or unloading or venting. We are here for you offering support in any manner you need.

Stay strong.

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.

Many of us know how you feel and understand what you've been thru.

I'm so sorry you had a reason to find us, but this is a great place to be.

I suggest checking the grieving forums or family member and caregiver forums.
Have advice or experience to share? Check ALL the forums and respond or reply to other postings. A lot of times we help ourselves by helping others.

It's a good place to be if you've been affected by lung cancer. Support, Awareness, Advocacy- even a good bit of hope... it's all here.

Welcome.

Keep posting. I look forward to getting to know you,

Hugs,

_________________
- Katie Brown, Co-Founder and Director of LCSC-

15 yr cancer survivor.

"Any of us who have experienced the cancer journey- and survived it-
have an obligation to make the path clearer and aid those that come after us."
- Lance Armstrong

In memory of Jessee Dewey, SCLC
December 29, 1938 - September 6, 2003
Lisa Dewey- Jan. 22, 2007
my parents are together in heaven


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