I never thought I'd be writing this, but I am. Tuesday night I had some troubling symtoms which, when added to some other concerns I've had the past month, convinced me to go to the most fully equipped ER on this part of the island. Spent 6 hours there Wednesday, had an MRI that was clearly positive for brain mets, saw my medical onc Thursday morning, radiation onc that afternoon, and started WBR the same day. Did the second WBR session Friday, and there will be 8 more over the next week and a half. Still feeling pretty good.

If you really want details, I started a thread at GRACE with a rather long post — at this point there are 33 messages in the thread spread across 3 pages:

http://cancergrace.org/forums/index.php ... l#msg64692

Aloha for now,

Ned

_________________
Ned is just my nickname, though it would be nice to merge it with the other meaning eventually...

Aloha means "Hello, goodbye, love, compassion, welcome, good wishes." It means belonging to others with a common humanity. It's defined better as a feeling in the heart than by words.

Dx NSCLC adenocarcinoma IIIb Sep 2006, now stage IV. Taxol+Carboplatin+Avastin 4 mo., Avastin 8 mo., Tarceva 16 mo., Alimta 12 mo. (sometimes combined with Cisplatin or Carboplatin), Navelbine since Feb 2010, 10 sessions of WBR in March 2011. See My Cancer Journey: viewtopic.php?p=351369#p351369 — UPDATED 03/05/2011.

Above left: Our golden retriever Rosie, who joined the family on 3/5/08 at the playful age of 2.

Below: Hannah, our golden companion 1994-2007.

I hope and pray that WBR kills those @#$^%!* deader than than can imagine NED!!!

_________________
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!!

I'm sorry to read this NED but can't help think that those brain mets don't know who they are fighting with! Hoping like Randy that the WBR kills any cancer cells deader than dead.

_________________
My sister Kelly was diagnosed with 3b NSCLC in May of 2007. A nodule on her adrenal gland has at times been thought to also be involved, but I, her surgeon, her radiation oncologist, and many oncologists I work with don't think it is. So we're going with that. She completed 5 rounds of carbo/taxol on a weekly schedule with concurrent radiation for 37 days. CT and PET showed nodes were clean but still residual activity in the tumor, which was reduced in size from 8x5 cm to 3x2cm. She attempted a lobectomy on 22 January 08 but the tumor resides a bit in the lower lobe in addition to the upper lobe, and the surgeon would not remove the entire left lung. She started Tarceva on 27 February 08. Her first scan showed decreased activity in the tumor and yet again, nothing new outside of that tumor. Her Dr. and I were actually kind of shocked! June '08 she had a total of 48 Gy of radiation via cyberknife. Her PET from 10 Sept '08 showed nothing new, the tumor size not really changed, but the SUV went down again, from 3.9 in May to 3.1, down from about 19 when this all started. She took a bit of a Tarceva holiday as we had some electrolyte issues due to not eating anything. She is currently back on it and taking 50 mg with tolerable toxicity. December '08 scan showed stable disease and yet again, less activity than before. April '09 scan actually said "area of hypermetabolic activity previously noted is not visualized today"! I could hardly believe my eyes and read it over and over. August and December '09 scans nearly identical! Now the June 2010 scan is just like the last ones - no uptake in the tumor, no new sites! Scan in January 2011 showed something on a rib on the contralateral side. Everyone in agreement that she broke a rib when she took a really bad fall a couple months ago. No one seems to think it is cancer, since the PET showed nothing in the lung or lymph nodes! Not moving to yearly scans yet though, so back in July! Our family really needed that good news as a month before we buried our 26 yr old nephew and are all still reeling from the shock and pain. July 2011 scan showed nothing new and she and the dr agreed to give her a drug break, so she went off Tarceva and so he wants to scan again in 3 months. There was a 3 mm nodule in the other lung and he didn't want to wait too long to scan given that and the no drug status. Scan in October of 2011 again showed nothing new, no growth, all is stable. The nodule in the other lung still listed as 2-3 mm. February 2012 scan was same as it ever was. :) Next scan is in August and she'll have gone one year without any treatment at that point. On May 19th it was 5 yrs from the day we heard she had lung cancer and we marked the occasion with a big party full of family and friends! She had a scan on Aug 24th and the results were more of the same, and marching orders from her oncologist that he doesn't need to see her for another year!

Oh man. Sending hugs and love and fighting vibes!! May the WBR zap everything!

_________________
[size=84]Mom diagnosed 11/03; age 58; NSCLC IIIA
Carboplatin/Gemzar
3/4/04--lobectomy
5/04--completed radiation
5/05--coiling for brain anyerusm found on routine brain MRI
8/05--triple bypass
10/06--PET, brain MRI, CT clear
8/07--NED
Currently in remission/NED
2/12--Stage IV squamous cell, a new beast
4/9/12--My mom passed away

Dad diagnosed 9/06; age 65 (asymptomatic); adenocarcinoma with BAC features
9/06--Wedge resection of 1.4cm tumor
Lots of little nodules remain and a small thing on brain maybe
11/06--Stable
5/18/10--Dx with Macroglobenemia (indolent lymphoma) & nodule growth
6/10--IT'S BACK! Tarceva time
[/size]

Well, crap, Ned! Glad you are so Johnny-on-the-spot and have your head right in the toaster to get rid of those pesky critters.

My thoughts are with you, one step at a time.

_________________
Courage is being scared to death - and saddling up anyway. ~John Wayne

Surviving is important. Thriving is elegant. ~ Maya Angelou

Keep your fears for yourself, but share your courage with others. ~Robert Louis Stevenson

*Picture was drawn by son at age six (he's now NINETEEN) - see the little blonde knight in the corner? That's him...my "Dragon Slayer"

34 y/o (on diagnosis) NON-SMOKER
1/28/03: DX NSCLC Adenocarcinoma-Stage I or II
2/10/03: surgery to remove lower 2 lobes of rt. lung w/7 nodes (3 +)
2/12/03: new DX: Stage IIIa (T2N2M0)
3/11/03: MD Anderson - not impressed
4/1/03: Began 5 1/2 wks rad
5/9/03: Began Iressa (1 yr)
7/23/03: Ended Iressa - too many side effects
10/04/04: Turned 36 and still NED!
12/28/04: Clear CT scan
1/28/05: Two year anniversary of diagnosis
3/28/05: Clear
6/27/05: Clear
8/26/05: Clear
12/07/05: Clear
12/16/05: Brain CT - clear
1/28/06: Three year anniversary of diagnosis
4/17/06: Clear
8/21/06: Clear
9/27/06: Brain MRI - clear
1/28/07: Four year anniversary of diagnosis
2/21/07: Clear
08/22/07: Clear
02/10/08: Technically, five years cancer free.
02/27/08: All clear! Could it be "cured?"
02/25/09: Clear
01/25/10: X-ray and blood work
01/29/10: Clear (7 years!)
05/26/10: Son graduates from high school - never thought I'd see it!
10/16/10: Married Mr. Right
1/24/11: Clear (8 years)
Currently watching...and wondering.

My story: viewtopic.php?f=47&t=8192

I just want to add my prayers to all the rest. Praying for a quick recovery and for your name and your condition to be the same again soon, NED

Well suck a duck!! Praying those suckers get blasted to smithereens Ned.

Denise

_________________
[color=green]Tom 77 yrs young, Devoted Wife of 20 yrs Denise age 49 yrs, 6 kids, 5 granddaughters, 2 grandsons [/color]
__________________________________
[color=blue]1/29/08 Diagnosed with Stage IIIA NSCLC Squamous Cell with lymphnode and liver involvement.
1/29/13 - 5 Year survivor!!
1/29/12 -4 years Survivor!!
2/11/08 - 7/16/08 7 rounds of chemo w/ Carbo/Taxol
3/24/08 Restaged at IV.
4/28 CT Scan
5/5 Results day / Great scan w/ overall shrinkage.
5/12 MRI scheduled.
5/20 - Rad consult
5/28 - 7/16 Radiation to chest 35 rounds
8/18 - CT shows the lung tumor is down to 3.7cm x 2.7cm and liver lesion is GONE!! No signs of metastatic disease within the abdomen. No further treatment need at this time. Next scan in 3 months.
12/5 Hospitalized with pneumonia
12/6 CT Scan all clear. Tumor continues to shrink.
12/10 Home on 24/7 Oxygen. SOB continues.
5/18/09 PET SCAN ALL CLEAR!!!
5/2010 NED!!
4/2012 NED!!
10/2012 CT = Mixed bag of nuts
[/color]

[color=purple]Don’t be afraid your life will end, be afraid that it will never begin. [/color]

[color=red]READ TOM'S STORY @ [/color]
http://www.lungevity.org/l_community/viewtopic.php?t=37425

Adding my prayers for you. Looks like you've got a solid plan to tackle the mets and I will keep praying the WBR is a total success with little to no side effects.
Please please keep us posted.

Another friend, Doc Rodgers, was just dx with 7 brain mets and starts WBR this coming week too.

My cup is full of prayers for you both.

(((hugs)))

Oh Ned I am so sorry that this has happened to you. It like that you got busy right away to get rid of them. Please know that I am sending positive healing thoughts your way and am praying for you.
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

Hi Ned,
I am so sorry to hear of your results,I dont know what WBR is,but I am praying for you that it is totally effective in wiping out the mets.Please keep us up to date.

_________________
Regards,
Eric Byrne

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

Ned, I am so sorry about this new development but very glad to see that your docs have an agressive plan in place. So I will cross all things and pray hard for success.

_________________
Ginny
Please use gdecoursey@aol.com for email.

Earl born 1/28/42 - dx 9/21/02 - died 8/18/04. He was the sunshine of my life.

Horrible thing to read first thing in the morning - but quick action and solid fight plan in place will make things work out - stay solid NED - show us how to fight!!!
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 really appreciate all the positive thoughts and good wishes, and I'll be sure to keep you updated on any side effects from the WBR (that's whole brain radiation, Eric) as well as what benefits I get later. Much Aloha,

Ned

_________________
Ned is just my nickname, though it would be nice to merge it with the other meaning eventually...

Aloha means "Hello, goodbye, love, compassion, welcome, good wishes." It means belonging to others with a common humanity. It's defined better as a feeling in the heart than by words.

Dx NSCLC adenocarcinoma IIIb Sep 2006, now stage IV. Taxol+Carboplatin+Avastin 4 mo., Avastin 8 mo., Tarceva 16 mo., Alimta 12 mo. (sometimes combined with Cisplatin or Carboplatin), Navelbine since Feb 2010, 10 sessions of WBR in March 2011. See My Cancer Journey: viewtopic.php?p=351369#p351369 — UPDATED 03/05/2011.

Above left: Our golden retriever Rosie, who joined the family on 3/5/08 at the playful age of 2.

Below: Hannah, our golden companion 1994-2007.

Ned, I am so sorry about this scary turn of events. I'll be praying and sending positive thoughts about the WBR.

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.

Sorry to hear this Ned. I should have your story memorized, but I don't. Is this your first run at WBR? Col had a bunch of rounds after her tumor removal. She handled it very well, and we haven't had any issues in the brain since then. Which tells me it worked very well for her. I'm praying you get the same results.

_________________
Wife Colleen, Age 34,
DX at Age 31 on Friday October 13th, 2006, with brain tumor.
Surgery to remove tumor, successful and fully removed.
Testing showed it was a met of lung origin.
DX stage IV nsclc - Adeno, both lungs, bone, bronchi, etc.
Immediately began Chemo and WBR, as well as lung radiation. 15 radiation treatments and 6 chemos carbo / taxal(sp?). 20% to 30% improvement after first three, no change, slighly worse after 2nd three.
March 2007-begin Tarceva. June scans show improvement. Lungs slightly better, airways more open, effusion gone. Continue Tarceva.
August '07 Scans. Stable from June. Continue Tarceva.
December '07. Cancer on lungs looks less dense. An improvement!!!! Everything else stable. Continue Tarceva.
March '08 - Stable Continue Tarceva
Jluy '08 - Stable everywhere, BUT new pericardial effusion found...
Effusion left as quickly and quietly as it appeared..Good news there.
Oct. '08- all still STABLE...
July '09 - Growth seen on Tarceva - stay on Tarceva, but adding chemo of Carboplatinum and Alitma

Add me to the list of well-wishers! Ned and I were going to meet for lunch yesterday, but had to take a raincheck due to those darn mets. I believe he's getting his radiation treatment at the same facility as my dad got his, and they're excellent. He's in great hands, folks!

Ned - you are truly an angel, asking how my dad was and offering your help even as you're going through this. My prayers and blessings are with you.

-Cathy

Ned sorry to hear those results were not better but those mets do not stand a chance in this battle. Take care.

_________________
02/07 spot showed on chest x-ray
04/07 ct scan confirmed spot
07/07 pet scan could not confirm cancerous
09/07 had lobectomy of upper lobe on left lung.tumour was 2.1cm
10/07 lymph node samples were negative. classified as stage 1b.
12/07 Begin 4 rounds of adjuvant chemotherapy. Cisplatin and Vinerolbine on a 21 day cycle.
01/08 First 3 month chest x-ray was all clear.
03/08 After 3 rounds, cisplatin wil be replaced by carbo for the last round. Ringing in the ears is a side effect of cisplatn.
03/08/08 Had treatment yesterday of Carboplatin/Vinerolbine. So far feeling alot better than when I received the Cisplatin. Treatment lasted 2 hours compared to 5 hours for Cisplatin.
04/08 Chest x-ray. All clear.
06/08 chest CT Scan. All clear
09/08 Chest x-ray. All clear
11/08 Chest x-ray. All clear
02/09 Chest and abdomen CT Scan. All clear
04/09 Chest x-ray. All clear
06/09 Chest x-ray and abdominal ultrasound All clear
01/10 Chest x-ray. All clear

Dangit, sorry to read this, Ned. Here's hoping the WBR does great for 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

(((Ned))), just want you to know that I will be sending lots of prayers and cyber hugs your way.

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.


graphic by
http://www.maryslittlelamb.com[/size]

Dang, just found this. WBR kill those mets. Kill 'em, smash 'em. I wish you the best! WBR can be very effective. I'm going to go to Cancergrace to read more. I have a friend dealing with this right now.

MI Judy

_________________
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

Ned,
Hate to hear this, but I'm sending all my positive thoughts your way. I am happy that your treatment is going well and I'm confident it will do it's job!

Cindy

_________________
age 56
surgery 6/20/03, stage 1B, upper left lobectomy
started adjuvant chemo on 08/14/03
3 cycles--cisplatin/gemzar
finished chemo 11/6/03
now 9 years post-lobectomy, annual x-ray and follow-up with surgeon
follow-up with oncologist every year/bloodwork and clinical exam

2001 early stage breast cancer/surgery and radiation only, no chemo needed. Mammograms once a year,

Just passed 11 year mark for the breast cancer and 9 year mark for the lung

Found this Ned. At least I didn't "miss it", it was during my cruise when I was out of contact. Damn, I'm so sorry this is happening to you but you are tough and getting thru it. I have to turn it around in 2 days to get to Orlando and my scans so it will be awhile but I'll catch up with your story on cancergrace.

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.

I hate this news Ned - but I KNOW you can beat those stupid mets!! You are in my prayers - always -
Janet

_________________
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

Don't know how I missed this -- as someone previously said, those mets just don't know who they are messing with! Positive thoughts and prayers for all the best results. 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

Positive thoughts for you Ned! You are a true hero and have been such an inspiration. I know you can beat this.

_________________
Dad is 70 yrs old - was a light smoker for a few years and quit almost 40 years ago. He's also had diabetes for almost 40 years.

Jan 2007 - Visited ER with shortness of breath and mild chest/shoulder pain. X-rays showed spot on right lung.
Feb 2007 - Ultrasound, CT and PET scans show activity in lung and thyroid.
Feb 23 - Surgery to remove right middle lobe of lung. Diagnosed as NSCLC adenocarcinoma. Tumor invaded the visceral pleura and one of four lymph nodes examined was positive. Stage 2B or 3A. A rib was fractured during surgery for even more pain.
Mar 06 - Because of malignancy in lung, surgery to remove right lobe of thyroid. (Lit up on PET scan) Not cancerous!
Mar 22 - Meeting to discuss treatment. Starting chemo, Gemcitabine (Gemzar) and Cisplatin (Platinol) next week.
Mar 29 - Started chemo, day 1 and 8 with 15 days off. Plan is to do 4 cycles.
Apr 26 - Two cycles have been completed. Side effects have included hiccups, nausea, vomiting, and fatigue. Arm at infusion site became red and painful. White blood count was low - Neulasta injection given. Steroid anti-nausea medicine caused severe side effects.(extremely high blood sugar and mental turmoil)
May - Dad took chemo on the first day of cycle 3 and then decided he wanted to stop. Side-effects were too much. IVs were taking 1+ hours to get started each time. Fatigue, nausea, anxiety, blood sugar control problems,... Dr. had wanted at least 3, but prefered 4 cycles. *I'm a bit worried about this and wish he had tolerated the chemo better.
Jun 29 - CT scan was done. All clear!!
Oct 12 - CT scan; awaiting results. Check out clear.
March 14, 2008 CT scan; still clear!
2011-12 Elevated CEA; new (small) spots on lung. Keeping close watch.

Hi Ned,
I just want you to know you havent left my thoughts,I havent heard from you recently, how you are doing?sorry it has to take a post with a gap of 10 days to ask the question all of us here want to know,what is your latest status?.I do feel a little ashamed that in the hurly burly of my own life,I took my eye, off the ball,being too busy to ask myself" How are you doing Ned"Cyber friendships,may be to some ,shallow and meaningless,but not to me,your welcome to me,more than a year ago,remains special to me.JudyKw and Bud also remain in my mind,thank you friend,your words of welcome remain with me,and I can only pray you are responding well to WBR,and can still be my friend for years to come.

_________________
Regards,
Eric Byrne

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

I'm reaching out to check in with him.

If I learn anything I will let everyone here know.

Many prayers and hugs and alohas going out for our dear friend, Ned.

(((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


facebook www.facebook.com/lungevity

Thanks Katie. I've been thinking of him for awhile. I sent a chatty pm to him a couple of weeks ago and thought it was funny I didn't hear back. Checked my mail and it was never "sent." Obviously, Judy failed to hit submit lol. He did respond to a post I put on CancerGrace a week or so ago.

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.

Lani, I feel like I know you through Ned's posts. He is such a strong and steadfast member, one of the first I connected with when I came online. I just hate hearing this news.

Please, please, let them make it o.k. We are with you in spirit giving you and Ned our combined strength.

Judy in KW

P.S. Here it is. I just discovered there are two threads.

_________________
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.

I am so sorry to hear this. May the drs. get Ned better quickly. Many prayers.

_________________
Ginny
Please use gdecoursey@aol.com for email.

Earl born 1/28/42 - dx 9/21/02 - died 8/18/04. He was the sunshine of my life.

I hate this news. Ned was also the first person to respond to me when I joined. I will be praying for Ned to recover from this quickly.

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

I'm freezing this thread for now since there are two going on simultaneously. His updates will be in the updates forum.

Prayers and hugs and much much love, Ned.

K