Lisa's Treatment History

6/12/08 Diagnosed with Stage IV Neuroblastoma

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
7/30/08 Stem Cell Collection

11/07/08 Tumor Resection

02/12/09 Stem Cell Collection

02/16/09 Chemo prior to tranplant (thiotepa/carboplatin)

02/26/09 Autologous BMT (discharged 3/11/09)

03/16/09 CT showed no evidence of disease

03/16/09 Received Vaccine Therapy (additional doses on 3/31, 4/4)

04/02/09 MIBG and MRI showed no evidence of disease

04/07/09 - 04/22/09 Radiation treatment

05/2009 - 11/2009  Accutane (13-CIS-RA)

11/18/09 Disease found on routine scans; Lisa was asymptomatic(MIBG uptake in left supraclavicular region, MRI showed left cerebellar hemishpere, CT showed pelvis and lower abdomen);

1/7/10 MIBG show multiple new areas in bone an soft tissue; including vertex of skull, left posterior occiput, skull base, left supraclavicular region, sternum, upper and mid thoracic spine, upper thoracic right paraspinal region, belly, pelvis, bilatateral posteromedial iliac bones, bilateral femoral heads, distal thighs.

01/10/10 Chemotherapy began (Irinotecan, Bortezomib (velcade); completed 4 cycles

4/26/10 MIBG  therapy (MIBG post therapy scan showed femoral bone marrow activity no longer present, uptake in left occipital bone now faintly visualized, no new areas identified)

9/06/2010 St Judes Phase I Trial of the Humanized Anti-GD2 Antibody (HU14.18K322A)---2 courses before disease progression too much (Initial St Jude MIBG showed activity in posterior right hepatic lobe, but no correlative abnormality on CT, no evidence of MIBG uptake in adbomen or pelvis, possible faint uptake in right ilium near sacroiliac join and within sacrum, faint uptake in proximal left femur.  After 2 courses there was  activity present in proximal left femur, distal right femur, midright femur, left pelvis, right paraspinal region, thoracolumbar junction, left medial pelvis)

12/06/2010 Began maintenance chemo at Motts; Irinotecan and Temopdaur (Scans done in Jan 2011 indicated lots of progressive disease.  Continue maintenance chemo drugs every third week until June 2011.

June 2011 Started Phase 1 Study ADVL0918: Chemo includes Temsirolimus infusion (days 1 and 8) in Combination With Oral Irinotecan and Oral Temopdaur(days 1-5). Lisa had nausea and vomiting on this therapy which delayed second cycle. The hope is that Temsirolimus may stop the growth of tumor cells by blocking some of the enzymes needed for cell growth. Drugs used in chemotherapy, such as irinotecan hydrochloride and temozolomide, work in different ways to stop the growth of tumor cells, either by killing the cells or by stopping them from dividing. Giving temsirolimus together with combination chemotherapy may kill more tumor cells.

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 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.
Aug 8, 2012 ....Back pain that has increased progessively since bone marrow biopsy on 8/3. The pain progressed to her legs over weekend and walking became more and more difficult..  Spiked temperature  and could not get out of bed...admitted thru ER.
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