History

  • 15 July 2009 - diagnosed with abdominal tumour at Epsom General Hospital following ultrasound and emergency CT scan.
  • 17 July 2009 - transferred to St George's Hospital, Tooting. Surgery to perform clavicular lymph node biopsy, and insert central (hickman) line.
  • 24 July 2009 - confirmed diagnosis of Stage IV (High-Risk) Neuroblastoma.
  • 28 July 2009 - transferred to Royal Marsden Hospital, Sutton.
  • July 2009 to Oct 2009 - Rapid COJEC induction. Eight cycles of 3 days of chemotherapy followed by 7 days recovery. 
  • Sept 2009 - Day 40 scans show clear bone marrow aspirates, but trephines still positive for neuroblastoma. Abdominal ultrasound inconclusive.
  • Oct 2009 - Day 80 scans show shrinkage of primary abdominal tumour and areas of resolved disease. Bone marrow trephines still positive, and extensive MIBG-avid bone disease remains. Classified as 'responding'.
  • Oct 2009 to March 2010 - 6 cycles of TVD (Topotecan Monday to Friday, Doxorubicin/Vincristine Saturday and Sunday). Re-staging after every two cycles shows slight improvement in MIBG, but continued bone marrow involvement. Still classified as 'responding'.
  • March 2010 to June 2010 - 3 cycles of Temozolomide/Irinotecan (Oral Temezolomide + IV Irinotecan Monday to Friday). Bone marrow finally clear but still extensive MIBG avid disease to his spine, pelvis and femurs. Classified as 'stable disease'.
  • July 2010 - 1st Peripheral Stem Cell Harvest, yielding 2 million stem cells.
  • August 2010 - 2nd Peripheral Stem Cell Harvest with Plerixafor priming, yielding 2 million stem cells.
  • August 2010 - Oral Temozolomide as holding chemotherapy as surgery delayed by two weeks.
  • September 2010 - Surgery at St George's Hospital lasting 8 hours resulting in complete resection of primary tumour, and removal of left adrenal and left sympathetic chain (no observable evidence of involvement of either). Left kidney mobilized to allow inspection and collection of tissue sample, but not removed.
  • October 2010 - 1st MIBG (I-131) therapy at University College Hospital in London. Follow-up scans show stable disease, no observable response to MIBG therapy.
  • November 2010 - Cyclophosphamide for stem cell harvest priming, and holding chemotherapy.
  • December 2010 - 3rd Peripheral Stem Cell Harvest, yielding 2 million stem cells.
  • January 2011 - 2nd MIBG (I-131) therapy at University College Hospital in London. Follow up scans show stable disease, no observable response to MIBG therapy.
  • February 2011 - High-dose chemotherapy (BuMel) with stem cell rescue.
  • March 2011 to May 2011 - Extensive investigations undertaken to determine best treatment path. 
    • MIBG scan continues to have extensive diffuse uptake in spine, pelvis, and femurs. No observable response to high-dose treatment. Classification is stable disease, no change since previous scans. There are no measurable lesions, no solid tumours.
    • CT scan is clear.
    • Bi-lateral bone-marrow aspirates are clear.
    • Bi-lateral bone-marrow trephines are clear for all standard and acknowledged tests for neuroblastoma. However, about 1% of the cells are ‘abnormal’ based on particular immunological testing. The significance of this result in unknown.
    • FDG-PET scan is clear.
    • Gallium Octreotide scan is clear apart from some faint uptake in the right femur. However, the uptake does not correlate completely with what lights up in the same area on the MIBG scan.
    • MRI scan of left pelvis/hip/femur is clear.
  • May 2011 - first cycle of 13-cis retinoic acid.
  • June 2011 - second cycle of 13-cis-retinoic acid. Pharmacokinetic testing of blood levels of isotretinoin, no dose adjustment required.
  • July 2011 - third cycle of 13-cis-retinoic acid.
  • Aug 2011 to Jan 2012 - ch14.18 + IL-2 immunotherapy at Universitas Medizin Hospital Greifswald, Germany in combination with 13-cis-retinoic acid.
  • Jan 2012 - suspicious enlarged lymph node seen on MRI in Germany. Repeat scans at 5 weeks, and then 6 weeks, after show node remains visible but unchanged in size.
  • Jan 2012 - MIBG-SPECT scan shows stable disease. Suspicious lymph node is NOT visible.
  • Jan 2012 to April 2012 - continuing 13-cis-retinoic acid for a total of 11 courses.
  • April 2012 - routine MIBG-SPECT scan at the end of April shows worsening of disease in Adam's bones, particularly the spinal area. Suspicious lymph node is also now slightly positive for neuroblastoma.
  • May 2012 - travel to Penn State, Hershey, for leukapheresis to prepare a DC vaccine to target Adam's neuroblastoma.
  • May 2012 - bone marrow biopsies show heavy disease infiltration in Adam's bone marrow. We decide not to proceed with the vaccine trial at this time.
  • May 2012 to June 2012 - two rounds of Temozolomide/Irinotecan. Subsequent MIBG scan shows mixed response; reduction in lymph nodes, but worsening of skeletal disease.
  • July 2012 - one round of Cyclophosphamide/Topotecan.
  • August 2012 - travel to Helen De Vos Children's Hospital, Grand Rapids, USA. MIBG/SPECT and FDG-PET/CT show further progression with enlargement of lymph nodes. Bone marrow remains same. We decide to enrol Adam on the NMTRC personalized medicine trial. Sample of Adam's bone marrow is sent to CHOP for ALK/PHOX2B testing.
  • August 2012 - Adam undergoes long needle biopsy of lymph node. Analysis produces individual treatment plan consisting of 28 day cycles of oral sorafenib and sub-cutaneous cytarabine.
  • September 2012 - at completion of first cycle FDG-PET/CT is stable and bone marrow biopsies remain the same.
  • September 2012 - tumour cells from Adam's bone marrow test negative for ALK mutation.
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