I was diagnosed Mar'11.Low sodium sclc-7cm tumor right lung-they said limited first-both the onc and rad onc .Day of lung rad sim they said they saw what might be Liver mets-no lung rads-started carbo/etop every 3 weeks 3 days-I was going to a community clinic-had no insurance..they did not do a biopsy to confirm liver mets-they did not give me nuelasta-chemo was a week late 4 times. Scanned at round 2-significant reduction in lung tumor,supposed liver mets reducing-said they saw evidence of bone mets but they were already gone-added zommetta.
I got insurance and moved to a aggressive cancer clinic here in columbus ohio-Zangmeister--my new onc was not convinced I had liver mets possible he said--without a biopsy there is no way to realy know as for the bone mets he said lets continue with zometta and see...He prescribed-4 more rounds of etop/carbo(making a total of 8,then pci if brain was still clear, then lung rads if the liver was clear. They scanned at 7 rounds and the doc came in and said-liver mets are completely gone-if they were liver mets--bone issues nonexistent ,lung tumor shruk to 1.8cm..he did say there was a lymph node that had grown 3 mm however could be the slant of the camera, allergies, or nothing-said the rad onc would kill it and the tumor. sent me to rad onc..he ordered immediate Brain Mri for the next day-came out clear as a bell, did final round of carbo/etop-finished PCI this week,Starting 6 weeks of lung rads on monday.
This new onc gave me the nuelasta from the git, I had very few side effects from chemo-hair did fall out-I went to work every day during chemo-I walk dogs for a living-I went to work everyday with PCI and I intend on going to work everyday with radiation. I asked my onc about prognosis...and he said--no prognosis--lets treat you. My rad onc, onc, and nurse practioner have all said that I have had a remarkable responce that I was doing very very very well.
I despereately need to hear from Long Term Survivors!!!!
Any advise or tips to survive would be appreciated!
thanks you!

Hi and welcome,

Sounds like you are doing fantastic. Don doesn't post often (I believe his last post was in May) because he is just plain busy. But I love his story and think it might be what you are looking to read:

viewtopic.php?f=7&t=18395&p=415815#p415815

Keep doing what you love - dog therapy is working well for you. By the way - did the dogs act funny around you before the diagnosis? There is research that dogs can smell cancer better than any early diagnostic testing we have!

_________________
(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

I am 3b lung cancer dx'd by cell analysis. LC but not evident in the lung. Started with chemo for malignancy in pleura (chest wall). It moved to the abdominal wall but still LC. I've been on treatment most of 4 yrs. With the exception of a couple of bumps in the road this past spring, I have been doing well and living a relatively normal life.

Sounds like you are on the right track with this change in treatment facilities. Keep up the good fight!

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.

Hi Thriving,
Sorry for the late reply,welcome to here,a place just bursting with lots of friendly caring sharing buddies,with lots of years clocked up surviving this disease in all its many forms and stages at dx.
Like most people when they are at first dxd with lung cancer,the search for re-assurance begins,I did it, bought the tea-shirt.If I remember my local library stocked about a dozen books on cancers of all types,I read everyone of them.I then searched out a variety of sources to find these elusive long term survivors,newspapers,journals,information booklets from the many cancer organisations.Good news stories did exist,I would cut them out,and keep them to refer to if I got a bit down, which did happen from time to time.
Actually,with the passage of time,my frayed nerves began to settle and I started to believe I may well be one of the lucky ones who can beat this,yes,I do have a future I told myself.
Then one day something wonderful happened(this is not a fairy story by the way-although for me it really was)I bought the local evening paper,in it was a guy called Robert Lowe,he was trying to start up a lung cancer support group in a hospital in Glasgow,so far so good,but when it went on to describe Robert's history of lung cancer,I just could'nt believe it.Dxd with SCLC in 1993,given two months to live,hospitalised for his chemo,his family called out on three different occassions to his bedside,as his doctors did'nt think he would see the next day,Robert to his doctors astonishment goes on to make a full recovery.In 2007 Robert is now dxd with NSCLC,has chemo and a lobectomy,goes on to make a full recovery.Robert today is 72 years old,not just surviving but thriving,his energy and lust for life is just amazing,he is now the longest surviving duel lung cancer patients in the UK,and I am proud to have him as a friend,since I joined his lung cancer support group in Stobhill Hospital.
And he still lives,happy ever after.

_________________
Regards,
Eric Byrne

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