CaringBridge.org - erikludwinski

Dec 27, 1991
Erik was diagnosed with stage 4 high-risk neuroblastoma (cancer of the sympathetic nervous system) at 6 years old

He was in remission and very healthy for 13 years

May 12, 2005
Erik was diagnosed with recurrent neuroblastoma at 20 years old in bone and marrow

He was in remission for one year

Nov 10, 2006
Erik relapsed again at 21 years old in bone and marrow

FRONTLINE TREATMENT (1991-1992)
for high-risk neuroblastoma at Dana Farber and Boston Children's (right adrenal primary, bone+bone marrow packed, MYCN non-amp, 1p del, poor histology, diploid DNA):
9 rounds chemo, surgery, 16 doses radiation to abdomen, autologous bone marrow transplant, no retinoids or antibodies

TREATMENT FOR FIRST RELAPSE (2005-2006):
two rounds dox/vin/cyclo and four rounds topo/cyclo at MeritCare Fargo, ND and U of MN.
Erik was the world's first patient to undergo a stem cell transplant with head-to-toe total marrow irradiation conditioning (included busulfan, melphalan, and thiotepa) at University of Minnesota-Fairview in Minneapolis (Nov 2005).
He was on high-dose 13-cis-retinoic acid (Accutane) for 6 months.

He was again in remission for one year

FOR SECOND RELAPSE (2006-2009):
Nov and Dec 2006: two courses of hu14.18-IL2 antibody trial (Phase II), but progressed with skull, spine, pelvis, and femur involvement, and bone marrow biopsy showed 70% NB
Jan 15, 2007: began IV irinotecan (2 weeks) + oral temozolomide (1 week) and had a miraculous response after two courses!!!
Feb 20 & 21, 2007: scans dramatically improved, bone marrow biopsies clear!!!
March 2007: one more round irino+temo
April 26, 2007: scans were again significantly improved, only two light spots remain in pelvis, two light spots in spine, faint uptake in femurs, and small amount in marrow
Mar 23 to Aug 15, 2007: no treatment
July 31, 2007: scans showed five spots in spine, one spot in pelvis, femurs clear, and biopsy (right side) positive
Aug 15, 2007:started new oral formulation of fenretinide (Phase I trial); completed 2 rounds
Sept 24, 2007: scans show more progression in skeletal system, especially entire spine
Oct 2007: two rounds of irino+temo with Celebrex
Nov 2007: great improvement in scans again (few spots in spine, pelvis, femur)
Dec 2007 and Jan 2008: two more rounds of irino + temo with Celebrex

Jan 31 & Feb 1, 2008: scans "borderline normal" with faint uptake remaining in marrow, and bone marrow biopsies clear!!!
Mar & April 2008: two more rounds of irino + temo with Celebrex; also gallbladder surgery (2/21) and another hospitalization (3/29 to 4/1) for fever
May 2008: PET/CT normal; bone marrow biopsy positive (NB<3 percent) on left side (right sample inadequate); start COMBAT (calendar) or see simplified diagram of COMBAT May 19--oral drugs Accutane, Celebrex, etoposide, temozolomide varied combos on 78 day cycle
Aug 2008: PET/CT clear, and < 1 percent NB in marrow! Continue on COMBAT, 2nd cycle (3 months)
Nov 2008: PET/CT clear, no biopsy performed (too difficult to obtain adequate sample); begin 3rd cycle COMBAT

Feb 2009:No biopsies; no PET/CT (CT of abdomen clear); HVA/VMA normal but slightly higher; start 4th cycle of COMBAT; next eval May 2009
May 2009:PET/CT shows new spot in pelvis near right hip (SUV 5.8); bone marrow biopsies still positive with <1 percent NB; HVA/VMA normal but slightly higher; start 1st cycle of year 2 of COMBAT; next eval Aug 2009--see graph with Treatment and Response since 2nd Relapse