My Temporary Story

[jaminkw]

I'm tired of trying to remember to unclick the "Attach signature" block on my posts. It seems I'll never get around to this story thing so I've copied my little profile summary from cancergrace.com as my signature and my old LONG signature here until I get time to put it in narrative form.

6/7/07

6/07 Extensive annual check-up, chest x-ray normal.

6/7 to 7/20 Dr visits 1st earache, 2nd extreme head pain, noted both on left side. 2nd visit dx occipital neuralgia, shots to area for pain.

8/22/07 Dental cleaning and check-up resulted in serious infection. Cleared with antibiotics.

9/6/07 Low energy but flew for planned vaca. Returned early with SOB.

9/13/07 Rested a day before going to dr. Presented with rash and searing pain in left side into breast. Doctor said my lungs sounded o.k. but since I'd had walking pneumonia previous year, asked if I wanted an x-ray. I said no! Was diagnosed with shingles with a follow-up appointment in one week.

Rash disappeared same day but the labored breathing continued to worsen. Waited for the follow-up appointment.

9/20/07 PCP listened to lungs, ordered an x-ray and sent me to ER with "a complete white-out of the left lung."

9/20/07 Admitted with pleural effusion and pneumonia after two liters of bloody fluid removed in ER.

9/20-9/24/07 X-rays and CT scans neg for tumors. IV antibiotics resolved the pneumonia. No new fluid accumulated.

9/24/07 Released with orders to follow up with PCP and wait for cytology report.

9/26/07 Follow-up at PCP incl X-ray AP/LAT and CT Chest showed very little residual fluid and no new build up.

10/1/07 Got a call from a doctor at Mariners Hospital. Cytology report showed adenocarcinoma cells in the fluid.

10/4/07 Saw PCP who recommended MD Anderson who would not give apptmnt because they did not consider dx definitive. Also, it was complicated because I was uninsured.

10/9/07 CT/PET Scan in Hollywood, FL. Got an appointment at MDACC pending the CT/PET results. The CT/PET findings included low- to intermediate-intensity abnormal radio tracer accumulation in the peripheral mid and lower left hemithorax, corresponding to irregular pleural thickening in that area.... The "Impression" included nonspecific hypermetabolic irregular left pleural thickening....The degree of radiotracer accumulation nondiagnostic and may be seen with infectious/inflammatory or low-grade malignant process. No focal hypermetabolic abnormalities noted outside the left hemithorax.

10/10/07 In route to MDACC, they called and cancelled my apptmt because the CT/PET was not definitive and requested a bronchoscopy.

10/11/07 Back to the Keys to a pulmonologist referred to by PCP Dr went over the CD-rom of my chest and explained he could do the procedure but did not think it would be any more definitive than what we've done so far. He discovered my hospital records included only one line and not a complete cytology report. Since his hospital uses the same cytologist he was able to find my slides. Thoracentesis cytology report resulted in adenocarcinoma within the pleural fluid. Tumor cells stained positive for TTF-1 indicating possibility of a pulmonary origin. Per his advice collected hard copies of tests done at every facility (CDs, films, slides, etc) He wrote a letter to MDACC with a statement saying he believed I had "a definitive diagnosis of adenocarcinoma of the left pleural space." Got another apptmt at MDACC.

10/25/07 - 10/31/07 Saw the oncologist and the thoracic surgeon. I had x-rays and an MRI. Thoracic surgeon agreed with pulmonologist that surgery would not enhance diagnosis. Am finally told the oncologist, Dr Tseng, nailed it with a consult after further cytology test-- DX IIIB lung cancer.

11/5/07 Had port surgically inserted.

11/6/07 Was to start 1st of 4-6 Taxol/Carboplatin/Avastin infusions every 3 wks. Because of protein and blood in urine, 1st was Taxol and Carboplatin only.

11/8/07 Saw urologist. Was cleared for Avastin next infusion.

12/18/07 CT scan 3 wks after 2nd infusion "stable."

12/29/07 In emails to and from Dr West at onctalk.com, he confirmed they do sometimes see very little tumor bulk (vs. pleural based nodules) with a documented malignant pleural effusion as in my case. He also confirmed convention is to treat it as advanced NCLS. He said further it is clear that the overall survival is more favorable with disease limited to chest only. Encouraging.

1/8/08 Onc says the words "not curable but manageable." CT WET before the Avastin was given in this (4th) infusion because of intense headaches. No mets, Avastin given.

1/29/08 Got results of CT performed 1/8: "improved." CT/PET scheduled for just before or after the 6th infusion (2/19) set for 4/1

April 1, 2008 After 6th infusion, CT/PET that showed pleural thickening was gone and no evidence of active cancer cells..

8/12/08 WET CT w/contrast--NED

11/4/08 Last Avastin maintenance infusion. CT w/contrast--NED

2/5/09 CT w/contrast--NED

5/4/09 PET shows cancer progression.

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!

Ha ha, My Story is still "temporary." This from the woman who once aspired to write. LOL