At a poster session for the 3rd biennial Pediatric Neuro-Oncology Basic and Translational Research Conference next month, physicians from St Jude Research Hospital will be presenting a retrospective review of their patients who had prolonged survival despite being given a diagnosis of diffuse intrinsic pontine glioma.
These physicians reviewed the records of DIPG patients at St Jude from October 1, 192 to May 31, 2011. Of the 191 patients there were 5 long time survivors with a median time from diagnosis being 9.3 years! It seems 4 out of 5 of these patients had some atypical clinical or imaging features that put them on the side of potentially better outcomes than the average.
All these survivors underwent neurocognitive testing. Interestingly, and unfortunately like so many other children who undergo brain radiation, cognitive function was impacted in 4 of 5 patients- two falling in the range of borderline/mild mental retardation. These findings will become increasingly important when there is better survival statistics for DIPG.
The researcher point out that prolonged survival does not equal cure. Two of the patients had progression years after their initial treatment with radiation.
It will be interesting to see what comes of this. Certainly the DIPG Registy could become very important to bring the information on all long term survivors together at one place.
Reference:
Clinico-radiologic characteristics and neurocognitive assessment of long-term survivors of diffuse intrinsic pontine glioma
https://soc-neuro-onc.conference-services.net/reports/template/onetextabstract.xml?xsl=template/onetextabstract.xsl&conferenceID=3467&abstractID=738281