Dear Friends,
My Dad was diagnosed 1 week ago with Stage 3B NSCLC. He is only 59 years old and is in otherwise good health. We are still absorbing the diagnosis and are in the process of setting up appointments, 2nd, 3rd, 4th opinions, etc. We are trying to figure out the best way to get the appts. sooner, since we wanted them YESTERDAY!

I found this site today and I am just so grateful. I know that my Dad can live with this disease and that he will be one of the amazing stories. It is just nice to know that others have done the same. So, thank you and I look forward to the support that I believe I will find here. Any advice is welcome...I am the oldest in the family- 33 with 2 children ages 5 1/2 and 1 1/2; a sister who is 28; brother who is 29; and a baby sister who is 20; don't forget my Mom who is really trying to figure this out! God Bless you all and take care.

Smiles,
Kristin J. Philadelphia area

Welcome, Krisitn!!! I, too, am im the Phila. area ~ well just a little more west ~ but grew up there some years ago. I was dx 3B or 3A depending upon which doctor you ask. In just a few short weeks I will be a 6 year survivor. Be sure to tell your dad that!

Let me know how I may help you and your family. I'd be interested in where your dad is being treated and where you are planning to get additonal opinions. I am more than willing to offer some insight.

Kasey

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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 Kristin and welcome. There is a wealth of information and support here . If you or your father have any questions Im sure there is someone here who can answer it for you or direct you to someone who can. Prayer said for your father.

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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

Dear Kasey,

We are heading first to the local oncologist- Regional Hematology and Oncology Associates in Langhorne with St. Mary's Medical Center. Dr. Evan Alley is our Oncologist there. We are also waiting to hear back from Fox Chase; have an appointment at Abramson at Penn with Dr. Corey Langer, but that is not until 9/28- any tips on getting it sooner? Also, putting in a referral to Penn Presby. for Dr. James Stevenson...mayber sooner? Willing to go to Sloan Kettering if that is necessary or would be beneficial.

My "poor" (because of our high strung selves) Dad is surrounded by extremely strong, Type A women, my sister and I currently in the lead who are making all sorts of phone calls and beginning to stalk the doctor offices! Mom is still adjusting, but I am sure she will be on board soon- until then, my Sister and I are enough for most!!! She is on the organic/holistic kick- I am the appointment, paperwork, insurance guru. We just like to do anything that makes us feel like we have some sort of control.

Thank you again. It means so much to have a support team of Survivors!!!! Please let me know of any insights any of you may have- Cancer Treatment Centers of America anyone???

Hi, Kristin, welcome to the group! What led to your dad's diagnosis, and how is he feeling? I started this cancer trip in August 2006, and actually I'm in better condition now than at any time in the past 4 years. You can read more than you ever wanted to know about my history by following the link in the signature area at the bottom of the message. You also might be interested in a rather unusual (I dreamed it up myself) graphical summary of my cancer experience — rotate the graph 90 degrees clockwise and zoom up to 100 percent:

http://wvpress.com/grace/bvsev.pdf

Since you're actively looking for info, may I suggest that you visit cancergrace.org (GRACE — Global Resource for Advancing Cancer Education). GRACE is led by Dr. Howard "Jack" West, a Seattle oncologist who is an internationally-recognized expert on lung cancer and who gives high priority to promptly answering questions online. A lot of us are "dual citizens" and have the same usernames there as here. Aloha,

Ned

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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.

Welcome - sorry you had to find us. I hope you will find our acquaintance useful.

I'm going to answer one of the questions that you specifically asked - though it is all second hand. The CTCofA appear to be well financed and advertised businesses. They like the good cases that make them look good and have a reputation for turning people down that don't fit their profile. It also sounds like their services are not covered by many insurance companies. On the other hand, a few people I've met who did go to one loved them. I've had no interaction with them, but they sound kind of like spa service or concierge services which can sure make you feel good whether or not they are effective.

I don't know what your financial situation is, but before you go ahead with 4 opinions, you may want to check with your Dad's insurance company. Most approve a second opinion, and then, may approve a third if there is a significant difference. The oncology visits add up very quickly - and multiple ones may not give you more choices or clarity.

I can appreciate what you are trying to do. You want a good match on a personal level with the doctors - how aggressive you want to be, do they listen well, explain things so that you can understand them - that sort of thing. For some people, this is a lot of personal time, for others, it is seeing their doctor's name on current research and convention/teaching presentations. And sometimes, what we need changes over time.

Best to you and your entire clan. Especially Dad.

_________________
(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 there,

You are on a ride of a lifetime. And right now you are on the high side, gathering information, trying to figure out what is best for Dad.

A little bit of advice. Let Dad feel he is in control and making the decisions. God bless you type A daughters, but this is Dad's life and he needs to feel like he is in control. There is nothing more out of control feeling than lung cancer. Allow him this please.

I was about your age when my Mom got sick with lung cancer, and like you, I wanted to get all the answers. The "not knowing" was killing me. But the alternative totally ticked my Mom off and one day she got so mad she told me to get the heck out of her house. She'd had it with my controlling will, and threw me out!

It was a hard lesson for me to learn, but learn I did. I learned to be the daughter, and let my Mom be the Mom, and it was the best lesson of my life.

I love your positive attitude and hope and pray Dad continues to do well.

Judy in MI

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6/07 DX NSCLC, Left Upper Lobe wedge resection: Stage 2.3/4, (2B?) Adenocarcinoma, measures 2.5x1.5x1.1cm. Involving visceral pleura but not through it. 5 rounds chemo, carboplatin and Taxol. Subsequent scans NED.

1/11 3.5 mm node found. 10/11 CT node now 8 mm, and new 6 mm node. 11/11 CT Pet shows slight uptake. 1/4/12 Biopsy - Pneumothorax complication. 1/14/12 Lobectomy of upper rt. lobe. NSCLC Adenocarcinoma in situ, nonmucinous (bronchioloalveolar carcinoma) 1.4cm involves pulmonary parenchyma.
3/14/12 Begin 4 cycles of Cisplatin/Navelbein, with Neulasta shot
4/6/12 Chemo changed to Carboplatin/Navelbine without Neulasta shot. Reduced chemo by 50% due to intolerance.
7/5/12 CT scan is clean, NED for lung cancer! There are issues with liver and stomach that will be investigated but not believed to be because of cancer. Wait and see!

*Avatar was taken 7/3/12 on our way out to see the Fireworks on a friends boat on their lake!

Mom dx SCLC 1/96, passed 10/19/96, age 62
Dad dx Brain cancer 4/87, passed 6/87, age 57
Sister dx Brain cancer 4/83, passed 12/83, age 25

Hi Kirstin, welcome onboard. Your Dad and Mom are lucky to have you doing all the research for options. I agree with Judy in MI tho that the final decisions need to be Dad's. You've already gotten great advice here so I'll just add that I recommend getting the best care you can as close to home as possible. I went to MDA in Orlando and wound up with an 8 hr drive each way every three weeks for two years. I was finally able to start my treatment close to home and just go to Orlando every three months. My life feels so much more normal now.

By the way, I was dx'd 3b and am closing in on three years and am traveling around the northeast with my husband while he works. I set up and get my 3-wkly treatments at cancer centers along the way.

Good luck and keep up posted. As most here will tell you, things do settle into a "new normal" once your father gets a treatment plan in place.

Judy in KW

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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.

Welcome Kirsten. I don't think there is much I can add to what everyone has already posted, but did want to welcome you. Like Judy in KW did, I am currently traveling 8 hours each way every 4 weeks for a trial treatment. I am not at all sorry I chose to do this, but at times it is very tiring, not to mention expensive.

Best of luck to your Dad and the rest of your family as well. Once a decision is made and a treatment plan is in place, life gets a little easier I think. This is a wonderful site and the people here are so knowledgeable and supportive.

Diane

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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

Welcome, Kristin! Glad you found us. You've already gotten some great advice. I just wanted to send best wishes for your dad.

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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