Hi folks.

I'm just checking in to let everyone know I'm still alive, 26.5 months from dx. I lost my voice about a year ago (something obviously pressing on some nerve that goes to the larynx) but that's harder on people who have the misfortune to hear me speak than it is on me. And I'm definitely weaker than I was and have minor aches and pains but nothing disabling or intolerable. For a couple of months I had 'orthostatic hypotension' -- my bp would plummet (like to 60/40) when I stood up or walked and it wouldn't go back up till I sat down. Had all kinds of tests and nobody could figure it out. Then I prevailed upon my cardiologist to cut my dose of Lovenox in half et voila! No more plummeting bp!

Re 'the path less traveled', I am soooooooooooooooooo glad I refused chemo etc. Even my cardiologist volunteered that she thinks I'd be dead by now if I'd taken it. But the best part is that it's been a pretty pleasant 26 months, which I know it would not have been with chemo.

Hope everyone out there in Lungevityland is doing ok and is as satisfied with their choices as I am -- that's all we can hope for, after all.

Ellen in PA

_________________
-66-yr-old woman
-Dx 12/26/07 at age 63
-Stage 4 NSCLC, adenocarcinoma, with mets to local lymph nodes, salivary gland, and pelvis, later vertebra.
-Have chosen to do no chemo or chest radiation -- have had radiation to pelvis and spine to lessen discomfort and, mainly, to lessen likelihood of stress fractures and nerve root damage. Successful!

Good to hear from you Ellen. Keep pluggin along and keep that great attitude you have. Maybe we'll see you at the luncheon.

_________________
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

Hi Ellen,

Soooo glad you checked in. Wow you certainly had some problems but so glad your cardiologist took care of that for you.

Hope to see you at the luncheon which I think is the 27th. I will have to find out from Ginny if that is a go or not.

take care my friend, so proud of the turn you took. It certainly worked for you!

Maryanne

_________________
"Life is not measured by the number of breaths we take...but by the moments that takes our breath away"
[size=75]
Husband Joel, 58 dx 10/18/04 Smoker since age 15 stopped when diagnosed
Adenocarcinoma- stage 1B
Lobectomy Left upper lobe on 12/15/04
biopsy on lymph nodes - negative NED
1/13/04 Oncologist appt.to see about preventive Chemo.
Cancelled due to chronic fatigue
1/12 fentynal patch for pain
1/14 discontinued Fentynal patch bad reaction
1/15 Blood test showed high T levels
2/1 Endoconrinologist visit diagnosed over-active thyroid
2/8/05 took Radioactive Iodine to kill thyroid
2/16/05 appetite back, fatigue leaving
2/24/05 visit with Pulmonary Doc. Breathing at 96% capacity,
Next visit 3 mos.
3/9/05 Endocrinologist visit -T levels went from 25 down to 5.
3/30 started Synthoid(thyroid med)
3/31 Oncologist. appt. CT results NED...
4/14 starting adjunctive Chemo (carbo/taxol) 4 treatments
3 weeks apart.
6/15/05 Joel finished chemo, chest X-ray clear, Next CT in August
9/01/05 1st CT since Chemo.. NED
11/17/05 CT - small nodule found 4 or 5 mil. in his good lung
1/10/06 CT - nodule Stable
7/2006 CT/ Nodule stable
10/2006 CT Nodule seem to have grown from 4 to 7 mil.
10/2006 Pet- showed some uptake
10/2006- operation- wedge section right upper lobe turned out to be cancerous 2 nodules next to each other. 2 different types of cancer. 1 squamous cell carcinoma (new primary)2- adenocarcinoma-(not sure if new primary or metastasis)
May be restaged to IIIB
11/07/2006 will start 4 rounds of taxotere. 3 weeks apart. Will take Decadron before, day of and day after. Will get a shot of Leunesta the day after. Here we go again.. Joel's attitude.... great as usual
Horrible reaction to the neulasta shots. One night(New Years eve) went to ER. Spent 3 days in hosptal.
Feb 2007 finished chemo.
March 2007 had his CT .. as expected right now all is clear.
June 2007 NED!!!
Sept 07- CT- small nodule 3.5 mm
Going to do another CT in 6 weeks.
October 07- CT done, results STABLE...YEA
Jan. 2008... STABLE!!!
April 2008 little growth but still called stable
July 17 208 nodule doubled in size to 9mm. Needs Pet Scan, tests, hopefully cyberknife...
July 29 met with his surgeon... said Cyberknife is the way to go.
August 1- Cyberknife visit... Joel is a canidate, its a go...Happy B-day Joel...
Sept 22, 2008 finshed up the last of 3 cyberknife procedures
Nov. had CT scan
Nov. 9th results of CT from Cyberknife..... Tumor completely gone... right now NED!!!
Feb. 09- Pet/CT results. . . NEd!!!
May 09 Pet/CT results. . . NED!!!
Sept. 09 Pet/CT results.....NED!!
Jan. 2010--- NED!! Pet now will be every 6 months.
June 8,2010 Pet scan on our Anniversary... hope thats a good sign..
June 17, NED!!!
Dec. 30,2010... NED!!!
June 20,2011... NED!!!
March 2012....NED!!!

pic of Joel and our daughter Nicole at walk NOV. 07

[img]http://www.freewebs.com/beansprouts2005/nik_and_dad_1LC_walk.jpg[/img]

http://www.babababies.com

Great to hear from you, Ellen. Glad you're hanging in there well.

_________________
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, Ellen, it's great to hear from you! Yes, life is a series of choices/tradeoffs, and while we sometimes may wonder "what would have happened if..." it's a good thing to be comfortable with those choices. Glad you're doing okay!

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.

Folks have been looking for you, Ellen. AND I am a bit late in wishing you a HAPPY B-DAY. But I forget if you celebrate the last day of Feb. or the first day of March. Whatever, hope it was a good day. Does that make you something like 16-1/2

Not sure of the luncheon. Some of us had other things the days Ginny posted. So I'm not sure if the 27th suits her or not. Maybe she will chime in here soon. And it sure would be nice to have your phone # and/or email to keep tabs on you. You're a slippery one!!!!

Thanks for checking in.

Kasey

_________________
Kasey ~ 8 year survivor ~ Stage IIIb 'inoperable' (yea, right!) lung cancer
9/20/04 Dx lc
9/24/04 Bronchoscopy
10/08/04 CT guided needle biopsy
10/14/04 Dx Pancoast tumor - NSCLC 111a(?) - inoperable - incurable
11/02/04 2nd opinion - Sloan-Kettering - concurs with local dx and tx
11/03/04-12/02/04 Radiation x22 chemo x5 taxol/carboplatin
11/04 - 3rd opinion - FoxChase -turned away
11/04 FOUND LCSC & HOPE
11/04 4th opinion NIH - surgery possible
1/04/05 Successful surgery - RU lobectomy - all margins, nodes, and path reports are NEGATIVE
2/05 chemo x2 taxol/carboplatin
3/05 Esophagus stretched twice
4/06/05 bloodwork, chest x-ray, CT scan, PET scan, NED
5/05 2 more esophagus stretches
7/13/05 bloodwork, chest x-ray, CT scan, PET scan, brain MRI, NED
10/05/05 bloodwork, chest x-ray, PET/CT scan, NED
1/11/06 bloodwork, chest x-ray, PET/CT scan, brain MRI, NED
4/05/06 bloodwork, chest x-ray, PET/CT scan, NED
6/10/06 emergency appendectomy
7/12/06 bloodwork, chest x-ray, PET/CT scan, brain MRI, NED
9/26/06 bloodwork, chest x-ray, PET/CT scan, NED
1/10/07 bloodwork, urinalysis, chest x-ray, CT, PET/CT scan, arm CT, brain MRI, NED
7/11/07 bloodwork, urinalysis, chest x-ray, PET/CT scan, brain MRI, NED
1/9/08 bloodwork, urinalysis, chest x-ray, PET/CT scan, brain MRI, CT w/contrast.....mm 'spot' lower right lobe - watch and wait 3 months
4/8/08 bloodwork, urinalysis, chest x-ray, PET/CT scan, NED
10/14/08 bloodwork, urinaysis, chest x-ray, PET/CT scan, brain MRI, NED
4/15/09 bloodwork, urinalysis, chest x-ray, PET/CT scan, brain MRI, NED
10/13/09 bloodwork, urinalysis, chest x-ray, PET/CT scan, brain MRI, CT/contrast, NED
4/13-4/15/10 bloodwork, urinalysis, chest x-ray, PET/CT scan, brain MRI, CT/contrast, PFT, echocardiogram, EKG, stress test, NED
4/11-4/13/2011 bloodwork, urinalysis, chest x-ray, PET scan, CT scan w/contrast, brain MRI, NED
4/16-4/18/2012 bloodwork, urinalysis, chest x-ray, PET scan, CT scan w/contrast, brain MRI, NED

Great to hear from you Ellen! I'm glad your path has been good for you and I pray it will continue to be so. Go go girl!

Susan

_________________
76 year-old mom diagnosed with stage IV lung cancer January 5, 2007.

15 radiation treatments to the spine and four rounds of chemo, Jan-May, 2007.

Stable disease May, 2007-May, 2008.

Bone scan May, 2008 shows new mets in the spine, pelvis and ribs.

July, 2008--finished radiation and has a Quadramet treatment.

October, 2008--Scans show mild progression. Began chemo (carbo/taxol/avistin). Will have four rounds of threatment (every 21 days) and scan in January.

01/05/2009--TWO YEAR SURVIVOR!

4/2009--STABLE! No treatment. Next scan in July

7/2009--Scan shows pleural effusion. Fluid drained and malignant. Cancer has spread to other lung and a 13 mm lesion is seen on the liver. Mom to begin Alimta on 8/3

11/2009--Alimta was hard on mom and scans showed progression.

12/2009--began Tarceva, noticed almost immediate improvement.

2/25/2010--Celebrated Mom's 80th birthday!

5/15/2010--Mom watched her oldest granddaughter graduate from college and then paritied well into the night! She's still feeling great.

6/15/2010--Mom watched her youngest granddaughter graduate from high school. Still feeling great!

8/2010-10/2010--Mom begins feeling tired and stays in bed more and more. Scans reveal that the cancer is moving rapidly throughout her body.

10/13/2010--Mom wins her battle once and for all, and passes to a place where the cancer can no longer touch her.

For a more detailed timeline see:

http://www.lungevity.org/l_community/viewtopic.php?p=360385#360385

Dear Ellen,

It is with much joy that I read your post. Keep on living your life and know that we keep you in our hearts and minds.

Best,
Stephanie

_________________
(photo: me in '61)
Female never smoked, 52 at diagnosis, otherwise healthy
09/08: false cardiac event = finding of 3 cm tumor upper right lobe plus two .5 cm nodes elsewhere on chest x-ray at ER
09/08: CTScan with IV contrast confirms.
10/08: Pulmonary referral for EBUS - bronchoscopy - confirms NSCLC - adenocarcinoma, with bronchoalveolar features
10/08: PetScan - further confirmation, classified T1N0MX (false negative) VATS scheduled.
11/08: full open surgery - revised to T4N2MX with positive spread to 2 lymph nodes, removed upper lobe with 3 cm tumor and partial mid lobe with (1) .5 cm tumor, 3 lymph nodes on trachea - 1 lymph node and margins negative.
5 night hospital stay.
12/08: Port-a-cath implanted
12/08: Brain MRI and hearing test - good other than minor high end loss in left ear
12/08: start (4) 21 day cycles of chemo - day 1 cisplatin and gemcitabine, day 8 gemcitabine alone, day 15 off - tolerated it pretty well - a little hair thinning and follicle inflammation, some ringing in ears and vertigo, much fatigue, and nausea. Kept my taste-buds almost intact.
02/27/09: completed 4 cycles of chemo!
03/03/09: removed port-a-cath
03/27/09: tattooed for radiation
03/30/09: start radiation (IMRT) 5x/wk for 6 weeks - fatigue, moderate esophagitis
5/08/09: completed treatment
6/22/09: NED
9/18/09: Recurrance in the liver and scattered in lungs. No symptoms. Rx Tarceva.
9/25/09: start Tarceva
11/20/09: clear lungs, shrinkage in liver.
2/24/10: still good on Tarceva
6/3/10: graduated to 6 month scan
12/9/10: new 6 cm tumor in liver
12/28/10: stop Tarceva
1/10/11: carbo/alimta/avastin
3/11/11: scan after 3 cycles 72%ish met reduction, stay the course
5/26/11: scan after 6 cycles, stable.
5/31/11: begin Avastin maintenance.
8/17/11: met growth, stop Avastin. Start Alimta.
10/25/11: met growth, stop Alimta. Wondering what to do next?
1/24/11: start hospice

Hi Ellen, so very glad to see your post. I was just talking about you to a friend that is going to grad school in linguistics.

Can you do lunch on 3/27????? Really hope so.

Ginny

_________________
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.

Ellen, it's great to hear from you! Sorry you had a rough time of it for awhile. Glad you figured that bp problem out for the docs lol. We really are our own best advocate. Stay well and enjoy that lunch. I always wished I could make one but the timing is never right for when I'm coming/going in the area.

Judy

_________________
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.

Great to read your update Ellen! I continue to keep you in my prayers and I'm glad you're happy with your treatment choices!! keep us updated, we continue to be here for you!!!

_________________
- 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

Ellen,
Thanks for posting I have been thinking about you lately. Glad things are going well for you.

Dana

_________________
Mar. '08-Routine xray found Spot tip of upper left lung.
Dr orders CAT. growth confirmed.
Sent to Pulmonolgist who orders PET.
Pet results-my spot lights up like a Christmas tree.
Can't reach spot for biopsy referred to surgeon.
Surgical Biopsy scheduled for Apr. 28th '08
Apr. '08-Surgeon found SCLC, removed upper left lobe and surronding lymph nodes.
Everything biopsied no other cancer found, declaired NED by surgeon on Apr.28th '08
ONC wants me to start adjuvant therapy.
June '08-MRI brain scan and CAT NED
Chemo cisplatin/vp16 3 days every 3 weeks 4 sessions ended Aug. '08
Partial hearing loss due to Cisplatin
Sept. '08 1st CAT after treatment NED
Dec. '08-2nd CAT after treatment NED
Apr. '09-MRI (brain) and CAT NED
Aug. '09-CAT NED
Dec. '09-CAT and MRI NED
Apr. '10-CAT and MRI NED
Oct. '10-CAT and MRI NED
Jan. '11-XRay NED
Oct. '11-CAT NED

Hi folks.

Just checked in and noticed all these lovely replies to my post, for which I thank you!

And thanks, Ginny, for managing to get thru to me re the luncheon, in spite of my #$&%(#& phone being out of order for over a week. (Our phone lines in the street were laid by Benjamin Franklin and Verizon is too cheap to replace them so we lose phone service every time there's a heavy rain.) I really enjoyed seeing you all but missed Kasey and hubby -- hope you're feeling better, Kasey!

My email is ellen at babel dot ling dot upenn dot edu, if anyone wants to get in touch with me and it's raining. (Fortunately, the computer connection is via Comcast, not Verizon.)

Hope all of you are doing well and enjoying the spring.

Ellen in (finally dry) PA

_________________
-66-yr-old woman
-Dx 12/26/07 at age 63
-Stage 4 NSCLC, adenocarcinoma, with mets to local lymph nodes, salivary gland, and pelvis, later vertebra.
-Have chosen to do no chemo or chest radiation -- have had radiation to pelvis and spine to lessen discomfort and, mainly, to lessen likelihood of stress fractures and nerve root damage. Successful!

You are OK

_________________
Went for a CT Scan after noticing blood in mucus. 9/19/08
Comment-There is a 6mm calcified granuloma in the medial left lower lobe on image 32. This is associated with nearby scarring. No other parenchymal lesions are seen. There is no pleural effusion.

There is minimal mediastinal adenopathy. A prevascular node on 19 measures 1.2 cm x .8 cm. Aortopulmonary window node measures 2.3 cm x 1.1 cm on image 23. A precarnial node measures 1.7 cm x 1.2 cm on image 24.

Visualized organs below the diaphragm demonstrate a right renal cyst but no other singnificant pathology. There is no retroperitoneal adenopathy or ascites in upper abdomen.

Impression Calcified granuloma in the left lower lobe.
Minimal mediastinal adenopathy. This is of uncertain etiology and clinical correlation is suggested.
Complete CT Scan of the abdomen and pelvis may also of value to evaluate for additional adenopathy.


Pulmonologist said the nodules are all dead, come back in a year. PCP ordered scan of abdomen and pelvis all OK. Next scan 8/28/09

Yo Bud.

Thanks.

Another Philadelphian! Hope your neighborhood has better phone lines than mine...

A bunch of us locals have been getting together at an Irish-type pub in King of Prussia about 4 times/year. Ginny deCoursey is the masterful organizer -- you two should get in touch.

Where are you being treated? I'm at HUP but I've quit the oncologist -- she seemed annoyed that I was not bringing in those big chemo bucks and kept trying to shove me into hospice, even tho there's nothing that the hospice rep could think of that they could do for me at this time. I do still see my (wonderful) cardiologist every two months or so, so I'm not a total 'orphan'.

Ellen in PA

_________________
-66-yr-old woman
-Dx 12/26/07 at age 63
-Stage 4 NSCLC, adenocarcinoma, with mets to local lymph nodes, salivary gland, and pelvis, later vertebra.
-Have chosen to do no chemo or chest radiation -- have had radiation to pelvis and spine to lessen discomfort and, mainly, to lessen likelihood of stress fractures and nerve root damage. Successful!