There are however many people , parents and some clinicians included who understand that conventional approaches to treatment are just not creating the clinical outcomes that we all wish to see. It is now well established within research that a multi agent and multi pronged 'attack', will be required to fully manage or eliminate DIPG.
This may include, surgery for direct drug delivery, a priming of the tumour micro environment and immunotherapy approaches. If you are prepared to pay for private consultations you may want to engage outside help or seek out other experimental therapies in 'self pay' private settings.
Unfortunately new approaches in other locations really have not yet been studied in sufficient depth individually and in combination to make them available to every patient and currently will likely come at a huge cost expense to families . If you will be undertaking any of these options that may include overseas travel do make sure that on your return that you have a Consultant fully prepared to continue treating your child or provide any maintenance therapy and tests.
It can become blurred whose care they are actually under?
In instances where full cooperation is not received and information is not shared, it must be appreciated that it can become difficult for UK doctors to know how to proceed in treating a patient on return. In private settings however there will certainly be more approved drugs available for use in DIPG.
Available private and 'compassionate care' treatments and procedures like CED (Convection Enhanced Delivery) or IA (Intra Arterial Therapy) are not yet covered by clinical trial...and indeed will not be without funding and bridging initially the pre-clinical gap. Some processes are more well documented than others with more robust 'data' available but ideally Abbie's Army would want to see all the research funding investment available to instigate all the pre-clinical testing necessary to provide the crucial protection of children enrolling in these more experimental studies. We have to know that any responses are not purely down to 'relaxed treatment conditions' and there is a strong rationale and that above all it is 'safe' and any research data 'outputs' are freely shared.
With the full approvals and framework of clinical trial in place a robust data set under control conditions means any therapy can be developed further with any successful outcomes adopted for the benefit of all patients, not only those that can fund raise and pay.
Get in touch regarding 'Experimental Treatment' if of interest and we may be able to connect you with other families.
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