Neuroblastoma Parent Education Conference November 2017
I hope that, which is contained below, gives a flavour and some insight into the Neuroblastoma, [NB], Parents Conference 2017. It is written by Richard Brown, who attended on both days with trustees from JACK. He has shared the document with the hosts, [SKC]. Richard apologises for any omissions or inaccuracies. For some small portions of the event was not present in the events hall. This conference was organised by Solving Kids Cancer, [SKC]. This conference was part funded by J-A-C-K.
The conference was attended by approximately 50 ‘families’, [or a member of family], who have dealt with the disease or are supporting a child currently in treatment. Children were welcome and Solving Kids Cancer, [SKC], had provided activities and qualified child care to cover the entirety of the programme.
The forum of the conference was developed through three strands of communication and information.
- Drs and researchers providing input on therapy and trials in progress or trials which they hope to start.
- Q and A sessions: both during a speaker’s address and via open panel discussions at the end of each day’s session.
- Some qualitative comment involving matters such as parental decision-making processes and support SKC offers.
In relation to the progress of current treatments and trials the following was included:
Dr Moreno – based in Madrid.
Dr. M introduced a concept of NB being not one disease but may diseases. The principle being explored was the variance of the cancer’s biology in both patient groups and in individual patients. The causes of NB or the mechanisms of its initiation remain unanswered questions. The current therapies target NB cells but the ‘source’ of such cells are considered to be NB ‘stem cells’ and these have not yet been identified. There is also no current test for determining whether NB cells have matured, [in essence altered into a non-cancerous state].
Dr. Gray – based in Southampton, [ ‘our’ MiNivan trial].
She explained the trial’s concept of combining two antibody mechanisms, [ with other therapies]. The trial will use anti GD2 and anti PD1 antibodies. GD2 binds to the cancer cells and makes them vulnerable to attack by the immune system. PD1 activates the patient’s own immune system. GD2 is a passive therapy and does create a legacy of vulnerability within the child; PD1 binds to the immune system and should remain an active process beyond its infusion, [legacy mechanism]. Dr. Gray noted that there are currently about 500 trials in progress, which are seeking to gain advantage via the application of PD1.
Dr. Gray indicated to the audience her expectation the trial will be open to patients just prior to or just after Christmas.
Dr. Anderson – GOSH
Dr A is currently trialling CAR T cell therapies. This technique seeks to take advantage of the bodies T cells, [T-cells are a type of white blood cell that circulate around our bodies, scanning for cellular abnormalities and infections]. The T cells can, in theory and in tests attack NB cells because of their ‘abnormality’. CAR stands for Chimeric, [combination of human and animal] antigen receptors.
Dr. A produced some readily understandable schematics to assist us. Basically, the important bit of the T-Cell is massively increased to raise the propensity/ability of the cell to damage the NB cells.
Prof. Chesler – Institute of Cancer Research.
P. C is studying the genetics, genomics and the use of precision medicine to understand potential vulnerabilities within the
NB cells and then utilise precise biological mechanisms to target the same vulnerabilities. Two known and significant genes which ‘propagate’ the NB are MYCN and ALK.
MYCN has been too difficult to target thus far because it has what is termed a ‘slippery’ nature but P.C. indicated there are now some drugs which can affect the gene.
P.C indicated that the sequencing of tumors / DNA was critical to evaluating the tumor’s vulnerabilities. [ reflecting on Dr. Moreno’s re
marks it is clearly felt important that a child’s tumor is assessed during the journey of treatments – sic. the cancer’s changing and varied dynamic].
There is / are locations which investigate and collate the information arising from tumor analysis. There is also a variance in the practice of sampling tumors – some of this arises from ethical dilemmas when considering another invasion of the child to obtain tumor samples.
Prof. Kearns – Birmingham Children’s Hospital.
P.K. gave an insight into clinical research and the stages of its evolution from concept to therapy. [ I should mention that SKC are funding a specific coordinator in the center to SPOC NB trials and hopefully introduce added speed and efficiency into the processing and sanctioning trials].
Dr. Mody – Michigan
Dr. M gave an indication of the workings of the children’s oncology group, [COG – an ‘American’ entity], and the subgroup New Approaches to Neuroblastoma Therapy, [NANT]. Progression being made through chemo-immunotherapy.
Dr. Cheung – MSKCC
Dr. C spoke about his own antibody trials [Hu3F8 and 8H9] and his development of a vaccine. [A vaccine was also discussed the following day as a potential European advance / trial]. Dr. Cheung has been principle researcher at MSKCC since 1987 and it was acknowledged he had devoted his life to ending the impact of NB.
H. Pearson PhD. study – parental decision-making processes.
H.P. is starting a study which aims to understand how parents make decisions about the course of their child’s treatment. She explained why this is maybe important in providing parents with insight into understanding, dynamics, differences, positives and negatives. It will also help professionals integrate with parents.
Vicky Inglis SKC family support service.
Vicky provided the families with a resume of some of the services SKC can provide and both in the UK and abroad both financial, [travel costs and arrangements, accommodation, etc.] and in advisory capacity re aspects of treatment, [almost a translation service; reducing the complex to simple schematic of time-lines, physical effects etc.]
Mr. Gabra – Surgeon, Great North Children’s Hospital
Mr. G is very experienced in NB tumor resection. He presented the complexities of the surgery in detail and how parents can translate the outcome into plain meaning. Mr. G gave an indication of improvements via ‘robotic’ instrumentation and the introduction of radiotherapy into the theatre as a means of directly affecting the tumor bed. He felt there may be a benefit from creating a database of NB operations and the surgeons’ post-operative report. This would be of benefit in planning and assessing future procedures.
Prof. Holger – Children’s Hospital, University of Griefswald
Prof. H spoke further about immunotherapy including anti-idiotype and chemoimmunotherapy. The anti-idiotype refers to a mechanism for effecting a vaccine. This provoked significant interaction between some families and the speaker, [ Q why repeat a process that Dr. Cheung at MSKCC had been developing for some period? A Not exactly the same mechanism – and slight differences may be important. Q When? A. Uncertain due to but not solely cost].
Q and A with Prof. Andy Pearson.
Closing remarks – Matt White – trustee.
Matt summed up the conference and correctly described the reinvigoration such events produce. Matt, like Vicky, reflected on Jack being the start of and lead for parents seeking new treatments AND bringing Drs. and families together. For further details please see SKC’s website.