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Sept 2008-Stage I-top of left ear
Sept 2011-Stage IV-single met in left lung <3cm
Oct 2011-surgery to remove met
Nov/Dec 2011-ipi-got through all 4 bags-itchy after 2nd bag-swollen pituitary after 4th bag-decadron to treat
FEB 2012-NED
June 2012-Brain MET (<3cm); PET/CT clear
July 2012-Gamma Knife-seizure the following day-Keppra and decadron to treat
Sep/Oct 2012-4 more bags of ipi-itchiness is much worse-no more pituitary problems (still on steroids)
November 2012-necrosis and swelling as result of July gamma knife lead to craniotomy #1
November 2012-NED again as a result of craniotomy
January 2013-CT and brain MRI clear, still NED
April 2013-Recurrence of brain met-CyberKnife is scheduled; CT clear
June 2013-no response to CyberKnife; Craniotomy #2; surgeon left gliadel wafers (chemo) in surgical cavity.
Sept 2013-back to work; all scans clear; NED again
November 2013-2mm met (left lung) and 16mm met (right lung); normal LDH (138)
Dec 2013-started PD-1 trial (BMS); right lung met was 2.0 cm x 2.3 cm at beginning of trial
March 2014-luckily (and thankfully) I responded to PD-1; small met in left lung is gone; larger met in right lung shrank 78% and now measures 1.0 sq. cm
June 2014-met in right lung now 6mm x 7mm. 0.42 sq. cm. Shrunk 90% in six months. Brain still clear
October 2014-Brain still clear. Met in right lung 6mm x 7mm. Three recent seizures might be a result of scar tissue from June 2013 crani. Upped keppra to 1750mg/daily. Began 10mg lamictal for possible depression.
June 2015-Scans stable, had another seizure in June, out of work on doctor's orders but happy with scans
November 2015-seizure. Now on 3750 mg keppra. Fatigued and out of work but scans still stable. Two more PD-1 maintenance infusions left. Final met in right lung now 3mm.
June 2016 … Finish PD-1 trial
August 2016 … back to work!!
June 2017 … Still stable … the last time I worked an entire school year was 2010-2011
March 2018 … Seizure
May 2018 … All scans stable. Brain stable since crani #2 in June 2013. Body since Nivo started kicking butt in March 2014.
September 2018 … Seizure … Back to work for third straight school year. Up to 4250 mg keppra/daily. Fatigue is tough but still working and here with my girls.

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Stage 1

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Stage 4