Hi all - Just thought I'd post after a long hiatus. I have not kept up the details in my signature because there are so many now to add.

My mom was diagnosed with limited stage SCLC in spring 2007. Two and a half years ago, the cancer jumped out of the lung and is now a 6" x 6" tumor on her adrenal, plus she has had two < 5mm brain mets gamma knifed since then as well.

Despite the continued growth, her own immune system and chemo combos seem to keep her ahead of the curve.

The fly in the ointment is her moderate dementia (started about 1.5 years ago) now that may be a long-term survivor result of PCI 3.5 years ago (would STILL do that, by the way), possible vascular issues in the brain unrelated, or even Alzheimer's. A neurologist will give us some test results in the next two weeks.

The dementia is much more challenging than the cancer, as she cannot keep her appointment days/times straight, locations and yet insists on driving herself. She is not aware that she cannot trust her own memory, even with printed schedules. And she is cranky because she believes every other person is screwing up.

Hopefully, Dr. Neurologist will have some magic pills to help.

That's all from Lake Wobegon.

Linda

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Daughter of a 73 yr. old SCLC patient who smoked 1/2 - 1 pack a day for 55 years.

Mom is diagnosed limited stage 3/07.
Had Cisplatin and etoposide + radiation + PCI through 11/07.
Cancer jumps to adrenal gland 10/08.
Small brain mets in 8/10. Gamma knifed - ZAPPED!
Adrenal gland met has grown to 6" x 6" by 1/11.

Oh my - if it's not one thing - it's another. The lists sounded like a good idea to help keep her on track - I can't imagine how it feels to start losing total control, I'm thinking I would be in denial that's for sure. I hope that the next doctor comes up with some solutions that help your mom gain control again.
Best wishes and prayers,
Annette

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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!!!!

Wow, four years with her scenario is great. My cancer has jumped off my pleural wall onto my abdominal wall so I will take hope from her experience. I'm just three years out from dx.

As for the memory issue, here's hoping a dx will lead to treatment. I have an 80 yr old friend with Alzheimer's and the patch has significantly improved her functioning. They did take her driver's license away after a little mishap. She's still mad as hell about that but otherwise doing well.

Good luck and let us know when you get the test results.

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.

Linda,
It's great to see your post and even better to hear that your mom is still ahead of the curve in this lung cancer journey.

I'm sorry to read about the developments - please keep us posted and let us know what those tests reveal. I'll be keeping your mom in my thoughts and prayers- you too friend.

_________________
- 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 Linda,
Good for Mom! Her story is a miracle! I know this isn't the same but I was diagnosed with "pseudo" dementia. The neurologist believes it is stress/depression from the last few years. I know I get really frustrated! Continued good luck to Mom!

Dana

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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

Hmm, pseudo dementia. Very interesting. I believe we have got a real dementia happening with us, however. Mom has real cognitive problems. Ex: her middle finger was bleeding, she went to the bathroom for a bandaid, and bandaged her ring finger. Stuff like that.

Stay tuned...we have a neurologist report brief on 2/7. Thanks all for your notes.

Linda

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Daughter of a 73 yr. old SCLC patient who smoked 1/2 - 1 pack a day for 55 years.

Mom is diagnosed limited stage 3/07.
Had Cisplatin and etoposide + radiation + PCI through 11/07.
Cancer jumps to adrenal gland 10/08.
Small brain mets in 8/10. Gamma knifed - ZAPPED!
Adrenal gland met has grown to 6" x 6" by 1/11.