6/23/08 Started Chemotherapy Protocol ANBL0532
6/23, 7/28 Cytoxan/topotecan
8/11, 9/22 Cistoplatin/Etoposide
9/2, 10/20 Vinocristine/Cytoxan/adrianycin
Aug 2011 After 2nd cycle pprogressive disease shown on scans. Trying to secure spot on ADVL0912 (ALK) study.
Sep 2011...began another phase I study, ADLV0912, a study of oral PF-02341066 (Crizotinib) which is an ALK and C-Met inhibitor. We did not know whether Lisa had an ALK mutation, but tried this regimen at this time. She started this therapy on 9/6/2011 and her dose was 180 mg (215mg/m2) orally BID (5 pills daily). She tolerated his therapy very well, but was unfortunately found to have progressive disease after cycle 1 and came off study
Oct 3, 2011 Progressive Disease shown on scans (Lisa complains of leg and head pain regularily). Started on chemo regimen of Cytoxan and Topotecan. (Continual headaches and throwing up every 2 hrs...attributed to chemo...hydration given on 10/9)
Oct 12 - Oct 13, 2011 Admitted to hospital for not eating, can't lift head, walking funny, low counts, throwing up, few temp spikes, sore throat. Culture came back negative.
Oct 17, 2011 Headaches, appetite down, drowsy, low counts. Cyst found in back of brain...in hydrocephalus ventricle....cerebellar mass and leptomenigeal disease.
Oct 19, 2011 Had an endoscopic third ventriculostomy and a Rickam Reservoir was placed. Discharged from hospital 10/22.
10/21-10/31, 2011 12 Cranial radiation sessions to the cerebellar mass and completed this therapy on November 4th, 2011.
Dec 4, 2011 Round 1 of chemo cytoxan and topotecan (60% dosing)
Dec 13, 2011 Low counts, fever and admission.
Jan 2012 Round 2 of chemo cytoxan and topotecan (60% dosing)
Feb 6 - Feb 10, 2012 Oral cytoxan and topotecan
Feb 14, 2012 - Seneca Valley Virus and Oral Cytoxan
March 2012 scans stable (Lisa complains of spine pain)
April 1, 2012 Scans Stable
April 16, 2012 Virus cleared from stool, return to school approved
May 2012 scans show lot of new disease in legs, pelvis, spine
June 1, 2012 Chemo round 1 temodaur, irinotecan, (5 days)
June 18, 2012 Chemo round 2 temodaur, irinotecan, (5 days)
July 9, 2012 Chemo cancelled because of low counts
July 15, 2012 Boston MA ER because of head pain. No new disease on CT scan.
Aug 3, 2012 CT scan: stable, MRI of head:stable, MIBG scan: mixed bag.....more uptake in some of the bony areas, but there was one small are of improvement?! Lisa approved for second MIBG radiation therapy.
MRI scan confirms that there is new disease evident in the spine as well as soft tissue growth around the spine...leptomeningeal disease in spine with lesion at TB...Additionally there is new soft tissue growth in the neck area. Three consecutive days of chemo Cytoxan, and Topotecan followed by 21 days of radiation to the spine. Pain management regimen and palliative care begun.
Aug 11, 2012 Lisa once more bounces back with the help of prayer, pain meds, steroids. Will now follow a radiation regiment thru the end of month.
Sept 4 2012 Radiation therapy completed. Maintenance chemo of temodaur, irinotecan, and zometa (put calcium back in bones....once every month)
April 8, 2013 Admitted to ER for temp of 101.1, nausea, cough and increased pain in legs and head