Hi folks. Today is 15 months since I was diagnosed with Stage 4 adenocarcinoma. Still feel fine, still very happy that I refused chemo and chest radiation.

Please, no need to congratulate me -- all I did was not die. I just wanted to let people know that refusing chemo/rad is not an immediate death sentence.

Ellen

_________________
-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!

Maybe no need, but congratulations anyway! I think you've got yourself one of those "indolent" cancers that Dr. West talks about. My onc started using that term about my adenocarcinoma a couple of months ago — but I hesitate to tell anybody since many people would hear "insolent" and have their suspicions confirmed.

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.

Okay, Ellen, no big congrats or anything ~ just want to say I'm so glad to have gotten to know you. I think that alone calls for celebration of some sort. And BTW......how old were you this year??? What day did you eat cake? For those who don't now, Ellen is a leap year baby. I think she's somewhere around 16 or so!

,
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

Hi Ellen. Well I am going to congratulate you and the brave choices that you made. I also wanted to say that I have enjoyed getting to know you a bit on this site. You have a unique perspective and you are also sometimes just too funny! I enjoy reading your posts and the smiles they sometimes bring to my face. Keep it up...living and being you!

Sandra

Im so happy for you Ellen and I have a feeling you will be making this same post a year from now!

_________________
Dxed nslc stage2b,Aug.05 had right lung and 17 nodes removed which 2 had shown to be effected.August 27,05 had surgery redone again to stop bleeding. Started chemo sept.05 as a precaustioary. Have 3 month visit followups and have been ned so far and am hoping and praying to stay that way.Grade3 squamous cell type(T2,N1,Mo)tumor 10.5 cemtimeters,1 peribronchial node and 1 10R node involved

You rock, Ellen!!!

And I agree with Mike - may we be seeing this same post year after year!!!!

Hugs - Patti B.

_________________
My personal war against cancer:
Stage IV at diagnosis 9/29/06- told 12 months tops.......yeah, right!!!
5 rounds of radiation R hip
15 Whole brain radiation txs 7/20 - 8/7/09
8 weeks on oral Tarceva
To date, 80 IV chemo sessions and still counting
Chemos have consisted of:
Carbo/Taxol/Avastin
Avastin alone
Alimta
weekly Navalbine
weekly Gemzar, now on Gemzar every other week due to blood counts
All my veins have become inaccessible - port installed 12/30/09
Put on Alimta/Avastin as a combo
Currently on Taxotere, on 3 weeks off one

Aw, shucks, thanks everyone! It's been great getting to know yiz* as well!

*'Yiz' is Philadelphia-ese for "y'all".

Kasey, if you must know, I'm now 16 1/4. Aka 65, gag barf. (But better than the alternative, as they say.) No cake (I'm still following Atkins, except at Kildare's) but we went to a big-splurge steak restaurant that we'd never gone to before. Mmmm.

Ned, yup, indolent is just fine! I've been lazy all my life so it figures. One funny thing -- at my last onc visit, the resident saw me first, as usual. He was a new one and read my file and said three or four times, with increasing disgust/annoyance, 'Boy, you have a WEIRD cancer! Boy, this is WEIRD!' Of course, I couldn't resist and finally said, 'Gee, I'm sorry. Bad for business, huh?'

Thanks again, everyone. Here's to us ALL celebrating when I'm 16 1/2 next year!

Ellen

_________________
-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!

Ellen,
you are something else! Your attitude and humor are amazing...
ok, so no congrats, how about Hope to see a post like this each month for a LONG LONG LONG time!!

Here's to being lazy...may your cancer never get off it's butt

_________________
- 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

Hi Ellen,

OK, no congrats, but staying alive sure beats the alternative.

Of course, we are the winners having you post and be here for what we need so in our lives - other ways of thinking, including humor.

I always notice your posts. They are part of my "must reads."

Here's to indolence,

Barbara

_________________
Bill died peacefully on March 25, 2010. He was very much loved, and will be sorely missed.

Link to "Bill's Story," and more detailed list of treatment regimens:

http://www.lungevity.org/l_community/viewtopic.php?t=37269

Photo: Barbara and Great Granddaughter KayMarie taken January 2010 at Rehab where Bill was gaining strength.

Thank you, thank you.

Ellen the Indolent

_________________
-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!

Ellen,

If you are reading, please post or p.m. Sending you hugs.

Stephanie

Stephanie, I have also been thinking of Ellen a lot lately and sent her a PM quite a few days ago. Still no reply.

Ellen, still thinking of you. Hope you're doing ok.

_________________
Caren x

____________________________
Dad (Dave) Ex smoker (quit 18 years ago)
Diagnosed 11th Ausgust '08 with Adenocarcinoma-Some Lymph Node involvement - Right lung Stage 3b.

12/09/08 Restaged to stage 4.

22nd May 2009.
The Angels came and took you from me, at 7am, while I held your hand. I love you Dad and I will never stop loving you or ever forget you.
Sleep well now, Dad (((HUG)))

Avatar is the last photo taken of dad. Taken on the 19th May 2009.


3rd September 2009,Caren has been smoke-free for 11months!!!!

did Ya send her a PM also ?? Sometimes that works faster . Just checking. Hope all is well !!!!

_________________
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!!

Please let us know all is well!!!!

Hugs - Patti B.

_________________
My personal war against cancer:
Stage IV at diagnosis 9/29/06- told 12 months tops.......yeah, right!!!
5 rounds of radiation R hip
15 Whole brain radiation txs 7/20 - 8/7/09
8 weeks on oral Tarceva
To date, 80 IV chemo sessions and still counting
Chemos have consisted of:
Carbo/Taxol/Avastin
Avastin alone
Alimta
weekly Navalbine
weekly Gemzar, now on Gemzar every other week due to blood counts
All my veins have become inaccessible - port installed 12/30/09
Put on Alimta/Avastin as a combo
Currently on Taxotere, on 3 weeks off one

Please pop in and let us know your doing ok

_________________
My mom is 45 and a lung cancer patient Stage IIIA
Dx 11-17-04, 45 yrs. old.
Chest X-Ray
CT Scan
Pet Scan
Lung Biopsy (Superior Sulcus Tumor of Right upper lobe squamous cell)
Lymph node of neck biopsied (Negative)
Chemo and Radiation started 12-20-04
First week of Chemo finished 12-28-04 has three weeks off!
Started chemo on Jan 17th will hopefully finish on Monday the 24th and finishes radiation on Tues the 25th. Praying that this works!
Surgery March 1st. Successful Tumor was all dead Doc. says NED but has had no scans.
Chemo Etoposide/Cisplatin started again Beg. of April
Doc changed last round of Chemo to Carbo/Etoposide due to hearing problems and last round was postponed because of low blood counts
May 9th, 10th, and 11th last of the chemo!
Scans scheduled for Aug. 15th Praying for NED!
Scans show NED is with us! Appt. with radiation doc 10/23 and oncologist 12/19
12/27 Mom had appt. Doc ordered bone scan is to return in 4 months
12/02/2006 Mom had appt with Oncologis in November everything is going good. Scans to be scheduled not sure when I think in three months. Mom is doing great and unfortunately still smoking =( Dr said to stay away from sick people
3/13/2007 Mom is 22 months from last treatment and doing fantastic
9/25/2008 Mom turned 49!
10/27/2008 Mom still dong well. Ned is still our very best friend and we will keep him =)

Thinking of you, Ellen, and hoping all is OK.

Hope we "hear" from you soon.

Barbara

_________________
Bill died peacefully on March 25, 2010. He was very much loved, and will be sorely missed.

Link to "Bill's Story," and more detailed list of treatment regimens:

http://www.lungevity.org/l_community/viewtopic.php?t=37269

Photo: Barbara and Great Granddaughter KayMarie taken January 2010 at Rehab where Bill was gaining strength.