My husband and I got married in August 2009. In December I developed a cough. We went on our honeymoon in January and by the time we returned, my cough was still persistent and I had swelling in my abdomen. I scheduled an appointment with my primary.

They performed a chest x-ray, couldn't really see anything, prescribed me with Prilosec and said that my abdomen was possibly swollen from a pulled muscle from exercising. The doctor called me the next day to say she took a closer look at my x-ray and could see a little bit of pneumonia-antibiotics given and f/u appointment scheduled for the next week.

The "pneumonia" was worse, at my follow-up, different antibiotics and breathing treatments prescribed. Next chest x-ray showed improvement-everyone assumed that was the end of it.

At the end of February 2010, I went back in the doctor concerning something else. I mentioned at that time that I was still coughing quite a bit since my pneumonia, she said that is normal, it can continue up to 6 months.

On April 25, 2010, the coughing was so bad, I called again and they had me come in. Chest x-ray had her concerned, sent for a CT scan. This began the numerous quizzical looks, followed by questions of if I smoked and repeated statements of "well, you are healthy, young and never smoked, hmmmm." The results came back abnormal and I was referred to a pulmonologist.

We met with the pulmonologist on April 29, 2010 and he showed us the 4 cm mass on my right lung. I was 30 years old and had been very healthy up to this point. I naively asked what he thought it could be. The doctor said "we assume it is cancer until we prove otherwise."

He scheduled me for a CT guided biopsy the next week. The results came back negative for everything, including cancer. I was then scheduled for a bronchospy May 15-all the results again came back negative for everything tested.

My pulmonologist continued to prescribe high dose cough medicine as well as anything else he could think of to try and get rid of this unknown mass. He referred me to a rheumatologist, thinking I might have an immune deficiency disease. After more bloodwork, CT scans, and doctors visits, all was still inconclusive.

On July 21, 2010, we met with a cardio thoracic surgeon who scheduled me for a lower right thoracotomy and lobectomy on Friday July 23. He said what most everyone else said- "You're so young and healthy, I'd be surprised if it was cancer." When I woke from my surgery, my husband had the unpleasant task of telling me that I did in fact have cancer, NCSLC-Adenocarcinoma. I had never even had stitches before this surgery, let alone chest tubes!

After being in the hospital for a week, as we were discharging to go home, we got the results that it was Stage IV NSCLC. The doctor just kept saying, this is really bad, I'm so sorry.

Since then, I started a clinical trial with Tarceva and Avastin on September 1, 2010. All was stable in CT scan up until recently. Because my tumor was removed during surgery, my oncologist basically looks for new growth and measures the pleural fluid that is in the space where my lung was. We received the results of my last CT on April 20, 2011, after the previous one showed fluid around my heart. There is more fluid, I have a pericardial effusion. There also appears to be more fluid on my lungs as well as possible new nodules-all under 3 mm, so said a PET would not help to determine. The plan is for me to have a pericardial window done in a few weeks, then begin Carboplatin and Taxol.

I am very lucky to have a wonderful, supportive husband, as well as family and friends to make this disease more bearable. I have been reading on the forums since my diagnosis and finally got the courage to put my story out here! Thanks for "listening."

Sara in Kansas

_________________
Sara in Kansas
31 years old at diagnosis-never smoker, former runner

Treated for pneumonia Feb. 2010 due to prolonged cough, sent for CT scan 4/10, abnormal, 4cm mass on right lung. Pulmonologist 4/29/10, CT guided biopsy 5/10-negative for cancer, bronchoscopy 5/10-negative for cancer. Numerous blood tests later, referred to Cardiothoracic surgeon 7/10. 7/23/10-lower right thoracotomy with lobectomy-diagnosed Stage IV NCSLC, Adenocarcinoma. 9/1/10 Started Tarceva, Avastin. 4/20/11-Tarceva and Avastin stopped, pericardial effusion. 5/12/11-surgery for pericardial window, left lung collapsed during surgery, "extra" chest tube put in. 5/24/11start Taxel, Carboplatin. 8/2/11 End Taxel, Carboplatin, on a break until CT scan end of Dec shows progression. Jan 2012 clinical trial at KU Med. April 2012, progression showed with new spots on liver, left lower lung, right breast, and cancer in cervix. New treatment of Alimta and Herceptin starting 4/17/12.

Sara,
I am so sorry about the circumstances that led you here but know how comforting the posts can be. Like you I spent time reading before I worked up the nerve to post. As you probably have noticed the people here are very knowledgeable, friendly and always ready to lend a supporting virtual shoulder. It often makes things bearable knowing that many here have at least some knowledge of what you are feeling.

Since you have been reading for a while I hope you have also found cancergrace.org - that is an excellent resource to have since you can ask and get response to questions from people who have been in the same situation and oncologists. I have been so surprised by the wealth of information here and there.

I know it is a holiday weekend and some may not check in as frequently as during the week - but I wanted to welcome you. Check out the Just For Fun Forum - someone (anyone) starts a daily "Air" and we generally have a good rolling dialogue among members - we try and keep that one light but as you well know it's not easy - especially when you have been here a while and members seem like family.

If I can be of any support feel free to drop me a message - I don't wander far and check the forum here often. I hope that you have a wonderful holiday weekend and look forward to seeing you around the board.

Annette

_________________
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!!!!

Welcome, Sara, but sorry you need to be here. Annette is right; there are lots of great people here, with a wide range of experiences. I'll look forward to hearing more from you.

_________________
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

Hi Sara,

Glad to see you found us. I too, lurked for a while to make sure I felt safe here. Thanks for sharing your profound story.

Lung cancer does not discriminate. It affects the young, the not so young, the ones who never smoked, and those that did. It's time to educate the world on this, and get the research dollars we need to find a way to prevent or cure this disease!

I had the carbo/taxol cocktail that you are going to have. I found staying very positive helped a lot. Your hair may not fall out, but if you see it is.....well....all I can is I wanted to be in control, not my disease, so as soon as it started, I shaved my head. I found the cutest (but cheap) hats at the American Cancer Society's Tender Loving Care site which is here: http://www.tlcdirect.org

Sounds like you have a good support system, and that will be so helpful. Like Annette said, it is a holiday weekend, so folks may not respond, but add to this post on Monday and lots of folks will respond for sure.

Also, like Annette said, we have our Daily Air postings in Just For Fun Off Topics. There's a bunch of us regulars in there, and we do have a lot of fun! Feel free to join us there!

Take care, have a blessed Easter,

I call myself Judy in MI (Michigan) because we have another friend in here named Judy, but she is Judy in KW (Key West).

I'm very jealous of where she lives! JK

Judy in MI

_________________
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

Hi Sara and wecome to the best site on the web for LC fighters/ a caregiver not a survivor, but I can assure you that the people here are absolutely supportive and I am glad that you got up the courage to tell your story. I know there are many people here who can support you as you go through this fight. It's great that you have a strong support system at home, too. I gather you are a Royals fan: baseball is my favourite sport (being from the Toronto area I have to cheer for the Blue Jays!). In your honour I will make the Royals my second-favorite team for the year.

Glad you have a plan in place to fight this beast, and wishing you the best. Will watch for your future posts, and do keep posting and checking on this site and on cancergrace.org which are the best sites on the net that I have found for helpful advice and neverending support.

Regards from Toronto,
Jane

_________________
Caregiver to husband. Original diagnosis in 9/91 was kidney cancer. Kidney and adrenal removed 11/91 and we thought we had it beat. Then diagnosed 11/07 with non-resectable Stage 3A (tumor in one lung and in mediastinal nodes), later presumed to change to 4,(spots found on second lung - too small for biopsy but presumed to be spread, and also spread to remaining adrenal gland and liver.) He started chemotherapy and concurrent radiation in 01/08; Stage IV with mets throughout abdomen in Jan 09. Left us April 30th, 09. Avatar is husband and I in Fall 08.

Cancer has decimated my family: lost my Grandpa in 1964 (lung), Mom (ovarian) in 1981, FIL (lung) in 1989, cousin (colon) in 2011, brother-in-law (lung) and son-in-law's father (leukemia) in 2012.

We need to beat this foul disease.

Hi Sara,

It is good to meet you. Glad you finally had the nerve to post. I hate the fact that you had to go through so much to be diagnosed. Hang in there and be tough. We have to beat this beast!

Karen

_________________
2/8/11 Upper respiratory infection just like all my co workers.
2/16/11 Saw PCP and reported just not getting better, also had a weird "click" at the end of each inspiration.
2/27/11 Developed extreme pain in lower back, bilateral hips, and bilateral knees.
3/2/11 Went back to PCP and reported pain. She ordered xrays of back etc. I asked for CXR. Found upper right lobe collapsed. Doctor ordered CT chest. Dx with SCLC, extensive with mets through out boney thorax and brain.
3/3/11 Bronch confirms diagnosis. Chemo started with cistplatin and etoposide.
3/9/11 Discharged from hospital wondering "what the heck just happened?"
4/18/11- Scans to evaluate first 2 rounds of chemo. Good news! All tumors have shrunk or are no longer measurable! Continue with chemo regime. Next scans due May 31.
5/31/11 -Scans look good except brain mets slightly increased. Will start WBR.
6/9-6/28/11 -WBR. Back working full time.
7/11/11 -CT shows mild progression right upper lung.
8/1/11- CT shows right bronchus occluded again but no sign of tumor around it.
8/3/11- Started 2nd line chemo. Topotecan/Taxol. 3 days of infusions every 21 days. Had 2 rounds. Didn't work.
9/2011 admitted with potassium dangerously low! Decided to move home to IN so that my family can more easily help me with day to day living. Have new oncologist and am very happy with him! I can't help but feel that I have not been followed very closely, and that's a scarey feeling.
9/16/11 Started Gemcitabine weekly for 3 weeks, 1 week off.

Thank you all for your kind words. I am so glad I have found this community and look forward to "visiting" more with everyone.

Sara

_________________
Sara in Kansas
31 years old at diagnosis-never smoker, former runner

Treated for pneumonia Feb. 2010 due to prolonged cough, sent for CT scan 4/10, abnormal, 4cm mass on right lung. Pulmonologist 4/29/10, CT guided biopsy 5/10-negative for cancer, bronchoscopy 5/10-negative for cancer. Numerous blood tests later, referred to Cardiothoracic surgeon 7/10. 7/23/10-lower right thoracotomy with lobectomy-diagnosed Stage IV NCSLC, Adenocarcinoma. 9/1/10 Started Tarceva, Avastin. 4/20/11-Tarceva and Avastin stopped, pericardial effusion. 5/12/11-surgery for pericardial window, left lung collapsed during surgery, "extra" chest tube put in. 5/24/11start Taxel, Carboplatin. 8/2/11 End Taxel, Carboplatin, on a break until CT scan end of Dec shows progression. Jan 2012 clinical trial at KU Med. April 2012, progression showed with new spots on liver, left lower lung, right breast, and cancer in cervix. New treatment of Alimta and Herceptin starting 4/17/12.

Sara - welcome to the site. I am also sorry that you had to go through so much to get diagnosed, unfortunately with this disease it isn't that unusual, especially for younger people who never smoked. As Judy MI said -



I also had the carbo/taxol combo and found it not to be too difficult. I hope you breeze through the treatment and it kicks the cancer's *ss!

Please keep us posted on how you are doing.

Diane

_________________
3/98 Dx squamous cell NSCLC 2a at 50 yrs
4/98 Left lung removed, no chemo/rad
8/08 Persistent cough and shortness of breath, first appt. with pulmonary doc 11/4/08
11/08 X-ray and CT show tumor in right lung. PET scan confirms tumor, shows no apparent spread
12/08 CT/needle biopsy shows squamous cell NSCLC IIIB, doctors don't seem to agree if its a new cancer or recurrence - but onc believes it is a new one
12/08 Start concurrent radiation/chemo, Cisplatin/Etoposide
1/09 Chemo switched to Carbo/Taxol due to intolerance of Cisplatin
2/09 Radiation completed
3/09 Chemo completed
5/09 CT shows spot where tumor was likely/hopefully scar tissue
6/09 Begin Lucanix trial
9/09 CT scan - stable
12/07/09 CT scan - stable
3/1/10 CT scan - stable
6/1/10 CT scan - stable - begin 2nd year of trial
8/23/10 CT scan - stable
10/25/10 CT scan - stable
1/20/11 CT scan - stable
4/25/11 CT scan - stable - completed drug portion of trial, now follow-up with 3-mo scans
8/1/11 CT scan - stable
10/24/11 CT scan - stable. At my request, switching to 6 mo scans.
4/24/12 CT scan - stable.
10/30/12 CT scan - stable.
2/26/13 CT scan - stable

Avatar is with 10-mo-old grandson Ethan at Xmas

Sara, it is so frustrating to read your story and hear all the things you did right to try to find out what was going on with you. It's hard to believe in this day and age that cancer is still sometimes so difficult to find. I am older but like you was very healthy. Got yearly physicals including full lab work ups and chest x-rays. Still, they did not find my cancer until I got pneumonia and had a pleural effusion. It's very disconcerting, I know, to hear people talk about early detection. Great if they can find what you've got.

Stay on board here. You won't be sorry. It's a great supportive community.

Judy in KW

_________________
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.

Hi Sara,
I'm so glad you decided to post on our site. I look forward to getting to know you and reading more from you.

Blessings,
KatieB

Oh, Sara, thank you for sharing your story. I'm wishing you all the best with your surgery!

My dad (Brian) is much older than you are, but in his case too, the fact that he had never smoked probably delayed his diagnosis for up to a year, perhaps even longer. By the time cancer was actually considered, his disease was also Stage IV. It is truly heartbreaking that early detection of lung cancer is so rare. Hopefully, this will change as more people like yourself are brave enough to tell their story and raise awareness. Good for you!

All of us on this forum are pulling for you, Sara!

Sarah
Venice, California
p.s. I wholeheartedly second the recommendation to check out CancerGrace.org. What an incredible resource for all of us in the fight!

Good Morning Sara,
Welcome to LCSC,sorry for being a wee bitty late on arrival,well actually,having read the supporting voices of my many friends here to your post,the quality of their responses to you,I found it difficult to offer you anything more than what has been said.The buddies here are quite a bunch,knowledgeable,supportive not forgetting great fun,being here I am sure you will find your load being lightened somewhat.I look forward to getting to know you.

_________________
Regards,
Eric Byrne

To read my story, please follow the link : http://lungevity.org/l_community/viewtopic.php?t=43268

Sara--

I hate Lung Cancer. I'm sorry you're dealing with this and dealing with it so young... but I'm really glad you're here.

_________________
"All shall be well, and all shall be well, and all manner of things shall be well... No matter what."
--Julian of Norwich/Madeleine L'Engle

My Mom, Carol, was diagnosed with Stage IV NSCLC with several mets to the bones in November of 2004, when she was 57. Treatment included radiation to relieve the bone pain, Zometa to strengthen her bones, Cisplatin/Gemzar as a first line treatment, and Alimta as a second line treatment. Mom was referred to hospice while waiting for a Perifosine trial to begin, and she died July 19, 2005. Not a day goes by that I don't long for my mama.]

www.digtoesin.wordpress.com
www.newwaylc.blogspot.com

Sara your story is so sad and so frustrating. It is so hard to believe that in this day and age Lung Cancer is seldom detected until in the later stages. I was a caregiver not a patient but I found this wonderful place and now the people here are like another family to me and so many others.

So I will say welcome to the family and like so many others I wish you never had reason to be here. Also the same goes to the other Sarah. Please keep us up to date on what is happening with you and do go to find the just for fun forum.

Sara I know that you already have and that is great so am hoping that Sarah will join us there too.

Just remember what Judy said. One of the most important tools in fighting lung cancer is HOPE. I saw first hand what hope could do and what taking it away could do. There are so many here who have had stage 4 and are still here. Many still fighting and others who are stable or show NED. God bless.

Hi sara and welcome. I'm new here too. Like you I was waiting for answers far too long. seems lung cancer symptoms show up after it has had a chance to develop. I wish you all the best. I see you love your Royals too. Pretty cool to be able to throw out a 1st pitch. Your youth and fitness will help you get through this. God be with you. Alan

Well, my nausea continued so much the last few days they had me come in for fluids, thinking maybe I was dehydrated. After over 2 liters of fluids and some steroids, nothing was helping. They sent me to go get a brain MRI and we already got the preliminary results back that there are several tumors in my brain now. So I go in first thing tomorrow morning to meet with the radiation oncologist. They said I mist start the radiation tomorrow then. My Oncologist said it might be a couple weeks of M-F everyday treatment and I will not have my chemo during that time. We certainly were not prepared for this so, very, over overwhelmed. Will post more once we know what this will look like.

Sara

_________________
Sara in Kansas
31 years old at diagnosis-never smoker, former runner

Treated for pneumonia Feb. 2010 due to prolonged cough, sent for CT scan 4/10, abnormal, 4cm mass on right lung. Pulmonologist 4/29/10, CT guided biopsy 5/10-negative for cancer, bronchoscopy 5/10-negative for cancer. Numerous blood tests later, referred to Cardiothoracic surgeon 7/10. 7/23/10-lower right thoracotomy with lobectomy-diagnosed Stage IV NCSLC, Adenocarcinoma. 9/1/10 Started Tarceva, Avastin. 4/20/11-Tarceva and Avastin stopped, pericardial effusion. 5/12/11-surgery for pericardial window, left lung collapsed during surgery, "extra" chest tube put in. 5/24/11start Taxel, Carboplatin. 8/2/11 End Taxel, Carboplatin, on a break until CT scan end of Dec shows progression. Jan 2012 clinical trial at KU Med. April 2012, progression showed with new spots on liver, left lower lung, right breast, and cancer in cervix. New treatment of Alimta and Herceptin starting 4/17/12.

Well this is not what we wanted to hear that's for sure. But take heart - I think there are members here that have successfully had WBR. Hopefully the results start taking effect sooner rather than later. Please let us know how things are going - and know that my prayers and thoughts are with you and your family.
Annette

_________________
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 did definitely NOT want to here this, but it would seem that many on this site have received significant benifit from WRB. and with your attitude I am confident that you will overcome this as well. Wishing you the best and thinking of you daily.

_________________
Caregiver to husband. Original diagnosis in 9/91 was kidney cancer. Kidney and adrenal removed 11/91 and we thought we had it beat. Then diagnosed 11/07 with non-resectable Stage 3A (tumor in one lung and in mediastinal nodes), later presumed to change to 4,(spots found on second lung - too small for biopsy but presumed to be spread, and also spread to remaining adrenal gland and liver.) He started chemotherapy and concurrent radiation in 01/08; Stage IV with mets throughout abdomen in Jan 09. Left us April 30th, 09. Avatar is husband and I in Fall 08.

Cancer has decimated my family: lost my Grandpa in 1964 (lung), Mom (ovarian) in 1981, FIL (lung) in 1989, cousin (colon) in 2011, brother-in-law (lung) and son-in-law's father (leukemia) in 2012.

We need to beat this foul disease.

Sara,
May the radiation do its thing and get you back in your best form.
Stephanie

Hi Sara,
I am so sorry to hear your news,my thoughts and prayers are with you and your family as you proceed through your treatment over the next two weeks.Best Wishes.

_________________
Regards,
Eric Byrne

To read my story, please follow the link : http://lungevity.org/l_community/viewtopic.php?t=43268

Sara,

No one can be prepared for such news. I'm so sorry. I pray for the WBR to do the trick and get you back to feeling well. Hang in there, and do let us know how it's going.

HUGS

Judy in MI

_________________
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

Dangit, Sara, sorry to read this. But the others are right; WBR has done well for many here. I'm sending positive thoughts that it will for you, too.

_________________
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

Oh Sara,
I'm so sorry for this news. I am keeping you in my prayers.
HUgs,
K

I hate this news. We're pulling for you!

_________________
"All shall be well, and all shall be well, and all manner of things shall be well... No matter what."
--Julian of Norwich/Madeleine L'Engle

My Mom, Carol, was diagnosed with Stage IV NSCLC with several mets to the bones in November of 2004, when she was 57. Treatment included radiation to relieve the bone pain, Zometa to strengthen her bones, Cisplatin/Gemzar as a first line treatment, and Alimta as a second line treatment. Mom was referred to hospice while waiting for a Perifosine trial to begin, and she died July 19, 2005. Not a day goes by that I don't long for my mama.]

www.digtoesin.wordpress.com
www.newwaylc.blogspot.com

Praying that the radiation rids you of the tumors and that you can continue with your chemo for and return to good health.

Carol

_________________
Carol
64 Year old former smoker
1/4/05 at age 56 DX NSCLC, upper right lobe.
Staged IIA by PET Scan.
Restaged to IIIA by surgeon prior to surgery, after he examined PET and CT Scan results.
4/7/05 Completed 6 weeks of radiation and chemotherapy (taxol/carboplatin).
4/29/05 CT Scan.
5/21/05 PET Scan.
5/31/05 Met with surgeon, PET Scan showed nodule in left lung lit up that never lit up before.
6/9/05 Biopsy=OK nodule is scar tissue.
7/1/05 BRONCHOSCOPY,
MEDIASTINOSCOPY, THORACOTOMY SURGERY=ALL MARGINS CLEAN, 20 LYMPH NODES REMOVED. PLUS ONE RIB BONE. ALL NEGATIVE FOR CANCER.
8/9/05 & 9/1/05 ADJUVANT CHEMO. 10/4/05 1ST CT SCAN="Defined patchy density at the superior segment of the right lower lobe. Findings are most likely related to recent surgery and/or posttreatment change, however, this should be followed on subsequent studies".
1/3/06 Brain CT=Clear;Chest CT=Scar Tissue.
1/4/06 ONE YEAR SINCE DIAGNOSIS
4/1/06 Brain & Chest CT=NED. 6/13/06 XRAY=NERD.
7/1/06 ONE YEAR SINCE SURGERY.
10/25/06 CT=NED.
1/4/07 TWO YEARS SINCE DIAGNOSIS
5/3/07 CT=NED.
7/1/07 TWO YEARS SINCE SURGERY.
11/6/07 CT=NED
PLEASE continue to keep me in your prayers.WHEN PRAISES GO UP, BLESSINGS COME DOWN.[/size]
1/4/08 THREE YEARS SINCE DIAGNOSIS
3/20/08 CT=NED
6/20/08 X-RAY=NED
7/1/08 THREE YEARS SINCE SURGERY.
10/27/08 CT=NED
1/4/09 FOUR YEARS SINCE DIAGNOSIS
3/26/09 X-RAY=NED
7/1/09 FOUR YEARS SINCE SURGERY.
9/17/09 CHEST X-RAY CEA BLOOD TEST=NED
1/4/10 FIVE YEARS SINCE DIAGNOSIS
3/29/10 X-RAY=NED
10/5/10 CT=NED
4/1/11 X-RAY=NED
7/1/11 SIX YEARS SINCE SURGERY
10/10/11 X-RAY=NED
4/15/12 CT/PET=NED
4/18/13 CT=NEW 3MM NODULE FOUND ON UPPER LEFT LOBE

Sara, so sorry I missed this post that came while I was distracted by a visit from my grandson. Geez, I don't know what to say except hang in there. Let's hope the WBR does it's job and this turns out to be a bump in the road as we say here on site. Don't worry if your positive attitude slipped(slips). That's normal and if it happens, you will bounce back from this too. With your optomistic personality, I can almost guarantee it! Keep us posted when you can.

Judy in KW

_________________
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.

Hugs Prayers and positive thoughts to you during this rough course of things!! Die Ya Little Buggers!!! (Tumors!!)

_________________
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!!

Dear Sara,

I am just reading up on posts I might have missed. I am so sorry about the MRI results. My brain lesions grew a bit so I was also stopped on chemo and had WBR x14 treatments. Just wondering how you are doing after your radiation? I notice I am having a little trouble staying focused at work. Almost like major ADD.

Here's hoping your are doing well.

Karen

_________________
2/8/11 Upper respiratory infection just like all my co workers.
2/16/11 Saw PCP and reported just not getting better, also had a weird "click" at the end of each inspiration.
2/27/11 Developed extreme pain in lower back, bilateral hips, and bilateral knees.
3/2/11 Went back to PCP and reported pain. She ordered xrays of back etc. I asked for CXR. Found upper right lobe collapsed. Doctor ordered CT chest. Dx with SCLC, extensive with mets through out boney thorax and brain.
3/3/11 Bronch confirms diagnosis. Chemo started with cistplatin and etoposide.
3/9/11 Discharged from hospital wondering "what the heck just happened?"
4/18/11- Scans to evaluate first 2 rounds of chemo. Good news! All tumors have shrunk or are no longer measurable! Continue with chemo regime. Next scans due May 31.
5/31/11 -Scans look good except brain mets slightly increased. Will start WBR.
6/9-6/28/11 -WBR. Back working full time.
7/11/11 -CT shows mild progression right upper lung.
8/1/11- CT shows right bronchus occluded again but no sign of tumor around it.
8/3/11- Started 2nd line chemo. Topotecan/Taxol. 3 days of infusions every 21 days. Had 2 rounds. Didn't work.
9/2011 admitted with potassium dangerously low! Decided to move home to IN so that my family can more easily help me with day to day living. Have new oncologist and am very happy with him! I can't help but feel that I have not been followed very closely, and that's a scarey feeling.
9/16/11 Started Gemcitabine weekly for 3 weeks, 1 week off.

Im new to the forum and have just read you story in floods of tears.
Your story is so similar to my friends. Age 35 with 3 young children and the evil stage iv lung cancer with mets.

Im so sorry you are going through this and I pray your treatment is successful xxx