Sorry I haven't posted any updates lately. I have been so tired lately that it's all I can do to log on and read the posts on GRACE and Lungevity. Here's the good news though. The reason I'm so tired is because while I am having daily WBR, I have gone back to work! I just finished my 2nd full week of work. I have been off chemo for a total of about 6 weeks now to do the WBR, and I feel so much better! I am still achy from all the bone mets, but I have been able to get by with Advil at work. I will have 4 weeks after next Tuesday to enjoy then will be rescanned. If there is any progression, I will start back on chemo (blah). I will take it though cause for now, it's my friend.

I am growing some hair back!!!

-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.

what color cape are you wearing SuperWoman!!??? that sounds awesome for you!! take care and keep us updated!!

_________________
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!!

Wow, Karen, you've been through it since Feb. And back to work! I really admire people who can work and do treatment. How is the WBR? People don't say much about it. The one who did in a group here in Key West scared me to death thinking of having it. Sounds like you are handling it well.

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.

Very glad to see you posting - and actually reminded me that Sara is now going through the WBR treatments too. From things she has said I think that she may be copying you - now we have two super women!

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!!!!

Karen,
I'm so glad you're feeling better. And I hope you continue to improve. Wow! Back at work! You go girl!

Paulette

_________________
04/02/09 family doctor found spot on upper left lung on chest x-ray.
04/03/09 CT scan with contrast - shows 5cm tumor in left upper lobe.
04/08/09 Met with thoracic surgeon.
04/14/09 PET scan - cancer only in tumor. Echo stress test. Cartiod ultrasound
05/01/09 Vats surgery - Upper left lobe and wedge of bottom lobe. Clean margins and no spread to lymph nodes. Staged 1b because of size of tumor. In hospital 7 days due to fluid in remainder of left lung.
06/09/09 Met with oncologist - because of size of tumor adjuvant chemo recommended. Cisplatin/Navelbine, 4 rounds. Some problems 1st round but minor ones after that. Finished chemo August 24.
09/02/09 CT scan of chest with contrast - NED
03/02/10 CT scan of chest and abdoman with contrast - NED
08/25/10 CT scan of chest and brain with contrast - NED
03/01/11 CT scan of chest and abdoman with contrast - NED
09/19/11 CT scan of chest with contrast - NED
02/24/12 CT scan of chest and brain with contrast - NED
08/21/12 CT scan of chest with contrast - NED
02/22/13 CT scan of chest with contrast - NED
_______________________________________
10/13/86 Daddy died of lung cancer after a 8 month fight. Diagnosed 2/86.

Glad you are feeling better. And working, too! Wow. Keep us posted, PLEASE!

Muriel

_________________
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.

Hi Karen,
Good to hear from you again,you really are something special,going though treatments and continuing to work?I hope you are taking care not to overdo things.Sorry to hear you are going through this WBR,I am thinking and praying for you and Sara that the treatments you both are going through are 100% effective with minimal side effects.

_________________
Regards,
Eric Byrne

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

Thanks everyone! The WBR has not been bad at all. I only am doing 14 treatments and will be done on Tuesday. My rad-onc says that usually the last week and a few weeks after is when the fatigue will hit. I have to say that the fatigue cannot be any where near as hard as with chemo. The worse part of WBR for me is the mask as I am claustrophobic. I just go to my happy place and before I can pray The Lord's Prayer 2 times, it's over! I see a bright light and taste/smell bleach during each treatment. I am told people report all kinds of wild stuff like this.

-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.

Wow, it sounds like you are doing a great job of hanging in there. I hope the fatigue doesn't get you down too badly afterwards, but if it does, there's nothing wrong with just taking it easy until you feel better. Glad you checked in.

_________________
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

Thanks for the update! I would struggle with the claustophobia too. But like you said, you close your eyes, say a comforting prayer, and God soothes the soul doesn't he? Good for you, you are amazing.

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

Glad to see this update from you! You are amazing! I can't believe you are back at work and doing WBR and after having had chemo so recently. I'm so glad things are improving and pray that they continue to only get better for you.
Please keep us updated!!!

Karen, good to know you are doing so well. Hope the fatigue won't get any worse and you will be able to continue working. Glad you are almost done treatments .. enjoy your break til scan time. Will be keeping you in my prayers.

Hugs,
Sue

_________________
[size=84]husband, Mike, 59 years old
**2-01 dx'd Stage 1 nsclc-9cm tumor to right lung-no lymph node involvement...
**4-30-01 pneumonectomy right lung removed. No followup chemo or radiation , but scans and xrays were done
**1-28-04 dx w/recurrent stage IV nsclc tumor on stump of where right lung had been removed , lymph node involvement, tumor adrenal gland -lft side, **02-04-04- taxol & carboplatin 3 treatments-didn't work
**02-12-04- radiation 10 to lung for bleeding
**04-2--04-taxotere had 4 treatments. shrinkage had occured in all after 3.. continuing taxotere. making him very tired ... upper body swelling ..
** 08-01-04-in hospital
latest..
**08-02-04 had stent put in .. superior vena cava.. the vein was being blocked by pressure tumor.
**08-05-04-started 10 radiation treatments,
**08-30-04- started Navelbine on 3 weeks and off 1 Scan after 5 treatments show chemo Navelbine not working -slight decrease to lung mass, but slight increase to adrenal ....
**11-01-04-starting Gemzar ... had 3 treatments... too many side effects... Ct of chest and upper abdomen done on Dec. 2nd -results some shrinkage
**12-06-04-started Alimta Dec. 6th- first treatment went well Had 2nd treatment Dec. 27th ... developed a rash and is tired, but otherwise ok Scan Feb 7th, 2005 STABLE doing good continuing Alimta April 18th scans showed stable disease (after 6 Alimta treatments), but he now has pneumonitis... no more treatments until much better.. on prednisone and oxygen..
**05-31-05 Ct scan of chest showed pneumonitis resolved and stable cancer
**06-06-05-our 35th wedding anniversary... onc confirms everything resolving and stable -reccommends break continued til August
**6-15-05 to 6-18-05 in hospital due to mental confusion ..
had MRI-member empty head club

8-3-2005-Ct scans chest , abdomen and pelvic....Waiting and praying...
**8-8-2005-Ct results were that the chest area looked improved, but the adrenal area had increased and involved some lymph nodes.
Started Tarceva 150mg 8-16-2005-8-20-2005 stopped 2 weeks due to severe rash on 9-8-2005 started back on Tarceva at 100 mg now.. stopped again on 9-19-2005
9-30-2005 scans slight progression to nodes behind adrenal..
10-10-2005-Camptosar- CPT-11 started
10-31-2005- CPT-11
refused more CPT-11 made him extremely fatigued and nauseated
Dec. 6th -CTscans chest, abdomen & pelvic. shows stable but tumor compressing the esophagus..
Dec. 19th- had stent to trachea put in
Dec. 21st- he had stent to esophagus and feeding tube put in
Dec. 22nd.. he will ill put in hospital... vomiting and also coughing and congestion in for 4 days... home for Christmas Dec. 25th... still recouperating with antibiotics etc.
Continuing cough and numerous doctor visits.
*Jan 30th-Feb 4th- hospitalized again with cough ..
Still has cough , but controlled most of the time Hasn't been able to resume chemo

**My "prince charming", best friend, husband and soul mate,, Mike passed away March 2, 2006 after being a 5 year survivor and fighting a very courageous battle**
______________________
Mom- 78 yrs old..
nsclc diag May 2nd, 2007-surgery 2sm tumors removed in wedge section... lymph nodes clear
Tarceva as adjuvant started on June 23rd..quit July2nd.. side effects numerous... am waiting now til next appt. July 13th
July 20th... Mom NED.PET clear and normal .. will go back on half 75mg Tarceva... see how that works..
Stop Tarceva 8-25 too many side effects
Oct. 22nd- Mom surgeon visit, chest xray and results .. all clear, no sign of cancer...
Feb. 18th Mom's PET Scan
March 7th Mom's PET Scan results.. NED
Sept. 22, 08 Mom PET Scan
Sept. 29, 08 Mom PET results new nodule 3/4 "...here we go again.... :-(
*Updated*- Mom surgery- Oct. 30th.. surgeon removed top part of upper right lobe. Nothing showed malignant. She had pneumonia after surgery and a 3 week hospital stay, but she is slowly regaining her strength and is currently NED..

March 3, 2009 CT scan.... results showed some little things along suture line that the doctor believed was healing.. will wait til next scan and compare.

June 2, 2009- CT Scan.. results there is an area along suture line that has increased in size and thickening.. doctor thinks could be cancer... a needle biopsy will be done..

A quick update.. the results of the needle biopsy did confirm that it was cancer...

Cyberknife was done the first week in November..

Pet scan .. Dec. 8th...
Dec. 11th -results .. cyberknife worked and the rest of the scan is clean... YAY!!! Happy Birthday (Dec. 19th.. 81st) and Merry Xmas Mom!
Dec. 2010 NED!!!
June 2, 2011.. Pet Scan results .. NED!!!
Nov 3, 2011.. CT scan results.. NED!!!
Sept. 18, 2012 .. our loving mom has passed on ..Heaven received a most precious angel.


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