After a round of cyclophosphamide and topotecan, which hit Adam's blood counts hard, he flew out to Grand Rapids, Michigan, USA for consultation with Dr Giselle Sholler, Chair of the NMTRC - a neuroblastoma research consortium of hospitals. New scans showed continuing progression, with enlargement of lymph nodes. We decided to proceed with a long needle biopsy and to enrol Adam on the Molecular Guided Therapy for Refractory or Recurrent Neuroblastoma clinical trial. After analysis of his biopsy and cross-reference against databases of available drugs Adam began an individual treatment plan comprising 28-day cycles of oral sorafenib and sub-cutaneous cytarabine, both predominantly used in treatment of Acute Myeloid Leukaemia.
Bone marrow biopsies showed very heavy infiltration with neuroblastoma cells. It was a worse result than we had anticipated, meaning the vaccine trials we had been deciding between were no longer a good option for Adam at this time. We proceeded with two rounds of chemotherapy (Temozolomide and Irinotecan) after which a repeat MIBG scan showed a mixed response. Worsening of skeletal disease, but shrinkage of lymph nodes. We decided to move off this combination.
A routine MIBG scan at the end of April confirmed our worst fears. Adam's cancer is growing again. The disease spread throughout his bones showed up more prominently, particularly in the spinal area. And the suspicious lymph node, which had remained unchanged in size since it was first picked up on MRI, also showed tracer uptake confirming that it was in fact neuroblastoma.
We are assessing treatments abroad, in particular America. We've flown Adam over to have his blood taken so that a vaccine can be produced for a Phase I study running out of the Penn State Hershey. When he returns we will do bone marrow biopsies to see whether there is neuroblastoma infiltration there as well.
An MRI scan in Germany on 23rd January showed a new tumour at the top of Adam's pelvis, between aorta and vena cava inferior. We were left in absolutely no doubt that this was disease progression. We were obviously devastated, and then faced an agonising ten day wait for results of the MIBG scan that we'd been warned was likely to show more widespread disease. In the event the MIBG was unchanged, and by that assessment Adam's disease remained stable. We still do not know what was showing on the MRI, and plan to repeat the scan in the next week or two, for comparison. Will the 'mass' still be there? Will it have grown larger? We simply don't know until after we've seen the follow-up MRI.
** 12/01/2012 **
Adam has completed five rounds of immunotherapy combining the ch14.18 monoclonal antibody with the cytokine Interleukin 2. He is currently midway through his eighth cycle of 13-cis-retinoic acid. The plan is to continue 13-cis-RA until May and then seek to switch to a new treatment, hopefully oral fenretinide powder formulation.
Adam's next MIBG scan is scheduled for w/c 16th at the Royal Marsden in Sutton. He then goes back to Universitas Medizin Hospital Greifswald in Germany the following week for an MRI scan, bone marrow biopsies and end-of-treatment assessments.