Its been a while since I posted. I update the sig line. It's been so busy these passed few months. Mom finally came home 1/12/10 - she was doing good with physical therapy. Got her from a wheel chair to a walker. Seems like we are plateauing though. She began about a month ago - not being to see right - everything is fuzzy. Her gains with rehab have halted.

The pain where the tumor was (back) and her center chest where the lymph nodes were (surgeon couldnt even get to them - but they were ned on the last scan) is back almost as bad as before. She is miserable though. She said she hates this and wishes we would have let her go. She is smoking again...but she feels better that way so I guess its ok. She says her skin hurts - like to just touch...feels like a really bad sunburn (any suggestions?)

Anyways - we are fighting, one day at a time right. The last scan she was NED which is great....no disease but all the symptoms are still there - not sure if thats a good thing. Right now she is not being treated with anything except for pain meds. Do you guys have any suggestions? Do we go along with this and see what happens?

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I can't believe I am making a sig line... :(

My mother/best friend (50 yr old)
End of May - pulled muscle?
6/4 GP said pulled muscle...relaxers and heat
7/6 back to GP pain worse. XRAY saw mass...sent for CT scan confirmed
7/10 onco confirmed mass and Dx Pancoast Stage III
7/13 PET Scan no Mets except on lymph node center chest next to tumor
7/15 onco appt... Stage IIIA Adenocarcinoma...Radiation and Chemo (Carboplatin and Taxol) once a wk (5 wks) as long as tolerated and radiation everday for 7 weeks (here we are) :(
10/29 - Surgery (mets to tissue in back waiting on oncologist pathology to confirm)
11/3 - Hanging in there...ICU with pneumonia
11/9 Respiratory Failure - help!
1/12/10 - Home....still with walker and wheelchair - one day at a time
3/31 CT scan - NED
5/20/10 - Vestibular Hypofunction with Oscillopsia - her inner ear doesnt work. So she cant see straight or walk on her own. She is miserable :(

Oh my, I am so sorry about this turn of events. Sounds like your Mom has lost her will to fight. She may feel the inner ear problem doesn't explain her range of symptoms so she sees no relief in sight beyond the pain meds. That would discourage anyone. I don't know what choice you have but to go with it and see what happens. That is unless you want to find another doctor or doctors for another opinion. Even then, it would mean getting Mom's consent.

Good luck and keep us posted.

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.

Hi.

This must be so confusing for everyone, and frustrating. Chronic pain can wear anyone down, and cause depression too. I wouldn't handle that well either. I hope things improve. Don't really have any advice. Pain is there for a reason, and I guess I'd be hounding the doctors, or at least get her into a pain clinic for evaluation. I wouldn't know what else to do.

I hope things improve for Mom.

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

My husband complains of his skin hurting all the time, particularly in the area that was radiated. The onc has him on Lyrica right now and that seems to help. His must be nerve damage so I'm not sure if that would help your Mom or not. Sorry you all are going through this.

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Gene passed on Friday, October 29, 2010 at 4:45am after a hard fought 19 month battle with non-small cell lung cancer. He was a wonderful husband and father. I miss him more than words can ever say!

She has an appt tomorrow with a rehab specialist that is going to try to relieve some symptoms. Her ENT said not to expect much - although his dx was a plain ole vestibular hypofunction. It just seems like all of the doctors are like well whatever....its "this" or its "that" like it doesnt matter. Even her surgeon said "well you know its going to come back". It's like jeez - anyways. I just cant help but think that when we got home 1/12/10 - things were awesome....even by Feb she was walking aroudn the table outside without the walker. She was going to the salon....etc with no oxygen. Now - not so much. She is walking with the walker but slowly. She gets nauseated sporatically, the blurry vision is terrible, vertigo, brain fog.

Anyway - thanks for "listening"...I can just hope its something simple with an easy fix...right?

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~~~~~~~~~~~~~~~~~~~~~~~~~~~
I can't believe I am making a sig line... :(

My mother/best friend (50 yr old)
End of May - pulled muscle?
6/4 GP said pulled muscle...relaxers and heat
7/6 back to GP pain worse. XRAY saw mass...sent for CT scan confirmed
7/10 onco confirmed mass and Dx Pancoast Stage III
7/13 PET Scan no Mets except on lymph node center chest next to tumor
7/15 onco appt... Stage IIIA Adenocarcinoma...Radiation and Chemo (Carboplatin and Taxol) once a wk (5 wks) as long as tolerated and radiation everday for 7 weeks (here we are) :(
10/29 - Surgery (mets to tissue in back waiting on oncologist pathology to confirm)
11/3 - Hanging in there...ICU with pneumonia
11/9 Respiratory Failure - help!
1/12/10 - Home....still with walker and wheelchair - one day at a time
3/31 CT scan - NED
5/20/10 - Vestibular Hypofunction with Oscillopsia - her inner ear doesnt work. So she cant see straight or walk on her own. She is miserable :(

I've been praying for your mom and you. I hope they find some solutions and she receives some comfort and relief soon. I hate to read about all you guys are going thru and want you to know that you're both in my prayers. Keep us updated!
(((hugs)))

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- 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

I'm so sorry your mom is having such a rough time. Perhaps you can ask about the Lyrica and see if it might give your mom some relief. Doctor's defeatest attitude doesn't help. Sheesh.

Susan

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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