I think I lurked here for almost a year before I first posted. I found the site by googling questions I had and I kept finding answers by the same person - Ernie, from the Lungevity site, so I decided to check it out. I am a generally shy person. Even on line. (I don't ask people to be my Facebook friends, I wait for them to ask me.) So, I just lurked, afraid to butt into a conversation. But in those months I began to feel like everyone here was my friend. When I first posted I was overjoyed to get responses from people I had been "reading" for so long, Ernie, Ry, Ned, Beatlemike, Bruce, Kasey etc. It gave me such an instant connection, a feeling that I was no longer alone. I started telling all my family and friends about my "friends on Lungevity". I have come here often, with questions, with good news and bad, and hopefully I have helped others with support. I have also spent a lot of time in the Just for Fun forums, because, let's face it, we have to remember to forget about the cancer and have fun! There have been periods when I disappeared from the forums for a while. Sometimes after the loss of someone I have grown very close to or when I am going through a really difficult time, it is just too hard for me to be here. But, I know that when I am ready to come back, the folks here will accept me back, no questions asked and support ready!
My family and friends all know how important this site is to me, I have said before that this site and my in person support group are my life lines. Everyone here gets it. It was very hard for my husband to understand the connection, until the Hope Summit. He was so amazed at the connections a group of virtual strangers had, the laughter, the smiles, the hugs and mostly that his shy wife wasn't being shy!
I have been watching the "visitor" numbers on the bottom of the page. Lately it seems the numbers have been high, 50 or so visitors when I am posting. that is a lot of people getting support and hope from this site, whether they are posting or not. Someday they will break their shyness barrier and join in too and when they do, we will be there for them.
Katie, thank you for all of your hard work. God bless you.
Diagnosed at 47 years old - never smoked
3 amazing children, now 27, 25, and 24
Married 30 years
12/22/06 Diagnosed NSCLC Stage IV - Adnocarcinoma
Tumor in Rt Lung, 3 on Spine, one on the Pons of the brain
Radiation to the spine
Fractionated Linac Stereotactic Radiotherapy to the Pons of the brain
2/15/07 Start Tarceva 150 mg
4 1/2 years of "no progression of disease"
4/11/11 New mets on brain, Gamma Knife Radiation
Probable Leptomeningeal Disease.
Start "pulsing Tarceva" 1500mg 1xweek
7/11 - Brain mets swelling as an after effect of Gamma Knife, put on anti seizure meds, steroids.
New mets on spine and lung - watching.
9/11 - No new growth in Brain - more growth on spine and ribs. Back to Tarceva 100mg daily, adding Avastin every 3 weeks.
12/11 - Scans show no new growth, some mets stable, others have shrunk!
12/22/11 - 5 year survivor!!!!!
7/20/12 - scans show new growth in lungs and spine. Staying on Tarceva and Avastin and adding Alimta and Carboplatin.
10/12 Taken off Alimta and Carboplatin due to extreme side effects, continuing on Tarceva and Avastin - scans stable
Winter/13. Scans show growth again. Bones, lungs, lymph nodes, spleen. Time to look into clinical trials
4/13. Started clinical trial at Yale AP26113 by ARIAD, a "second generation Tarceva", side effects so far, diarrhea and nausea.
My story - http://lungevity.org/l_community/viewtopic.php?f=47&t=46162